MEASURE UP? ugust A Progress Report on State Legislative Activity to Reduce Cancer Incidence and Mortality

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1 H O W D O Y O U MEASURE UP? ugust 2011 A Progress Report on State Legislative Activity to Reduce Cancer Incidence and Mortality

2 Mission Statement American Cancer Society Cancer Action Network ACS CAN, the nonprofit, nonpartisan advocacy affiliate of the American Cancer Society, supports evidencebased policy and legislative solutions designed to eliminate cancer as a major health problem.acs CAN works to encourage elected officials and candidates to make cancer a top national priority. ACS CAN gives ordinary people extraordinary power to fight cancer with the training and tools they need to make their voices heard. For more information, visit Our Ninth Edition This ninth edition of How Do You Measure Up? illustrates where states stand on the issues that play a critical role in reducing cancer incidence and death. The goal of every state should be to achieve green in each policy area delineated in the report. By implementing the solutions set forth in this report, state legislators have the unique opportunity to take a stand and fight back against cancer. In many cases, it costs the state little or nothing to do the right thing. In most cases, these solutions will save the state millions of dollars in health care costs and increased worker productivity. If you want to learn more about ACS CAN s programs and/or inquire about a topic not covered in this report, please contact the ACS CAN state and local campaigns team at (202) or call our tollfree number, NOW-I-CAN, 24-hours a day, seven days a week. You can also visit us online at

3 Contents Table of How Do You Measure Up? Tackling Tobacco Use Tobacco Excise Taxes Smoke-Free Laws Tobacco Cessation Services Tobacco Control Program Funding Indoor Tanning Devices and Skin Cancer Obesity, Nutrition, and Physical Activity Increasing Access to Care Creating Consumer-Friendly State Health Exchanges.. 23 Medicaid Coverage and State Fiscal Pressures Colorectal Cancer Screening Coverage Funding for Breast and Cervical Cancer Screening The Lifeline to Quality of Life & Survivorship ACS CAN conducts federal advocacy campaigns nationwide and leads state and local advocacy campaigns in the 12 states of the American Cancer Society s Great West Division. In the remaining 38 states, state and local advocacy campaigns are directed by Society Division staff. The Society s National Home Office grants funds in support of ACS CAN and Division advocacy efforts. References

4 Measure How Do You Up? With the knowledge, science, and medical advances we have today, we could prevent about half of all cancer deaths in the United States. That translates into approximately 280,000 lives saved each year. If everyone in America were to stop using tobacco products, get screened for cancer, eat a healthy diet, exercise regularly, and maintain a healthy weight, we could make incredible inroads in the fight against cancer. Research shows that achieving that goal requires stronger tobacco control laws, better access to cancer screening and treatments, and policies that support proper nutrition and physical activity. Yet, too many women in the United States still miss their annual mammogram due to lack of insurance; families continue to be forced to declare bankruptcy due to a cancer diagnosis; nearly 4,000 children still pick up their first cigarette every day; and cancer patients continue to die simply because they do not have access to lifesaving treatments. The challenges are clear but we know what needs to be done to save more lives from cancer. We all have the ability to fight back against the disease by working with policymakers to enact laws and policies that eliminate barriers to prevention and early detection services, treatment, and follow-up care for people with cancer or those at risk for the disease, regardless of ethnicity, race, or socioeconomic status. Expanding Access to Care Nearly 50 million people in America are uninsured. Another 25 million or more are underinsured they have insurance, but their coverage is inadequate. Insured or not, millions of people don t have access to cancer prevention, early detection, and evidence-based treatment and care options that give them a fighting chance against this disease. In fact, more than 300,000 people in the United States die from cancer each year because they lack access to affordable, adequate, quality care, and treatment. State lawmakers play a critical role in guaranteeing access to care through state-funded screening programs, Medicaid coverage for low-income populations, and the development of health benefit exchanges as outlined in the Affordable Care Act. Facing a tough economy and shrinking state budgets, ACS CAN and the Society have worked hard this past year to protect and expand critical screening programs, such as the National Breast and Cervical Cancer Early Detection Program, to ensure that all women age 40 and older have access to lifesaving mammograms. In addition, ACS CAN and the Society have encouraged lawmakers to protect eligibility for enrollment in state Medicaid programs to guarantee that all Americans who qualify for coverage have access to routine cancer prevention, early detection, and treatment services. Every day, legislators at the state and local levels consider proposals and make funding decisions that impact cancer patients. Health insurance coverage, clinical trial participation, the development of new treatments, tobacco control policies, and funding for prevention and early detection programs are all issues that can be addressed by state and local lawmakers. Changes in laws for the better will impact millions of people, exponentially expanding and enhancing the efforts of the American Cancer Society Cancer Action Network (ACS CAN) and the American Cancer Society (the Society) to eliminate cancer as a major health problem. As advocates, we have the responsibility to educate the public on how to prevent and treat cancer effectively, but we cannot do it unless state and local policymakers take action. That is why ACS CAN and the Society urge lawmakers to work with us to fight back against cancer and save lives. With the passage of the Affordable Care Act in March 2010, states are starting the process to establish health benefit exchanges. These exchanges will serve as the central marketplace where consumers can compare and buy health insurance plans in the individual and smallgroup markets. Under the Affordable Care Act, states must be on track to receive certification for their exchange by January 1, In the past year, 11 states California, Connecticut, Colorado, Hawaii, Illinois, Maryland, Nevada, Oregon, Vermont, Washington, and West Virginia have passed legislation to set up a health exchange, and more than half of all states introduced exchange legislation or passed legislation signaling the intent to establish an exchange. ACS CAN and the Society are available to work with state policymakers to help implement state health exchanges to ensure that cancer patients have access to the best possible care. 2

5 Prevention Saves Lives Throughout the past year, advocates from ACS CAN and the Society have been working hard to pass and protect laws and policies focused on disease prevention, including strong tobacco control measures and the promotion of proper nutrition and physical activity. Comprehensive smoke-free laws, which include all restaurants, bars, and workplaces, reduce exposure to secondhand smoke, encourage people to quit or cut down on smoking, and prevent youth from starting to smoke. As of July 1, 2011, 35 states, the District of Columbia, Puerto Rico, and 949 municipalities across the country require 100 percent smoke-free workplaces and/or restaurants and/or bars. These laws cover nearly 80 percent of the U.S. population. According to an April 2011 report by the Centers for Disease Control and Prevention (CDC), if current progress to enact smoke-free laws continues, all states could have comprehensive smoke-free laws by Despite legislative advances over the past decade, many states still need to close loopholes that allow for smoking in ventilated areas, casinos, bingo parlors, hookah bars, or cigar bars, at certain times of day in some venues, or for certain events. These exemptions weaken the laws and do not adequately protect the public from the dangers of secondhand smoke. It is also critical for states that currently have strong laws in place to work to protect those laws and oppose any new exemptions that may put the public, especially service and hospitality workers, at risk for increased exposure to secondhand smoke. Increasing cigarette excise taxes has been proven to reduce the number of current and potential smokers. Research shows that every 10 percent increase in the price of tobacco reduces youth smoking rates by 6.5 percent and overall cigarette consumption by 4 percent. Cigarette taxes are also a powerful economic tool, directly producing sustained increases in state revenues and resulting in large savings in health care costs. $1.00 per pack. New York has the highest cigarette tax at $4.35 per pack and Missouri has the lowest at 17 cents per pack. No state's tax rate comes close to matching the health and economic costs attributed to smoking, which are estimated at $10.28 per pack. Many states are also working on policies and programs to reduce cancer risk related to poor nutrition, lack of physical activity, and obesity. For the majority of Americans who do not use tobacco, weight control, dietary choices, and physical activity are the best ways to prevent cancer. ACS CAN and the Society encourage state legislators to make a commitment to creating healthy environments for all Americans. Scientific research has yielded numerous tools for preventing and treating cancer, resulting in nearly 900,000 lives saved between 1990 and 2007, the most recent year for which data is available. Despite this progress, far too many Americans confront barriers to leading a healthy, active lifestyle and accessing screening tests, and/or counseling and cessation tools to facilitate healthy behaviors like quitting tobacco use. The data in this report show that there is still much public policy work to be done to achieve our mission of eliminating suffering and death from cancer. Nearly 1.6 million people in the United States will be diagnosed with cancer in 2011 and more than 570,000 people are expected to die from the disease this year alone. 1 ACS CAN, in partnership with the Society, is dedicated to ensuring that lawmakers enact state health reforms that help prevent cancer and save lives. Will you help us fight back against cancer? How does your state measure up? During the past 10 years, 47 states and the District of Columbia have raised their cigarette taxes in more than 100 separate instances. The current average state cigarette tax is $1.46, with 21 states still having taxes of less than 3

6 Prevention Tackling Tobacco Use There are 46 million adult tobacco users in the United States. 4 The statistics for youth are even more troubling approximately 17 percent of high school students are smokers. 5 Every day, an estimated 3,450 youth in the United States smoke their first cigarette and 850 youth become daily smokers. 6 As many as half of those youth, who continue to smoke throughout their lifetimes, will die prematurely from smoking-related diseases. Tobacco is responsible for 443,000 deaths in the United States each year, 1 including 30 percent of all cancer deaths and 87 percent of all lung cancer deaths. 2 Tobacco use is associated with increased risk of at least 15 types of cancer, as well as heart disease, stroke, hardening of the blood vessels, chronic bronchitis, and emphysema. Tobacco-related disease costs our nation an estimated $193 billion in medical care and productivity losses each year and remains the nation s most preventable cause of death. 3 The Annual Report to the Nation on the Status of Cancer, , published in 2008 as a collaborative effort of the American Cancer Society, the National Cancer Institute, the Centers for Disease Control and Prevention, and the North American Association of Central Cancer Registries, concluded that the regions in the United States with the least comprehensive tobacco control policies experienced higher rates of tobacco use and tobacco-related cancers. Smoking rates declined steadily during the 1990s and early 2000s, but the decline has stalled in recent years, with smoking rates nearly constant since Although tobacco control advocates have made significant progress in addressing tobacco use, the tobacco industry continues to undermine new policies, releasing new products that target youth and other non-cigarette tobacco products many of which are not covered under existing tobacco control laws. The new products may prompt youth to start using tobacco and make it harder for adults to quit. ACS CAN and the Society support a comprehensive approach to tackling tobacco use through policies that: 1) Raise the price of tobacco products through tobacco tax increases; 2) Implement comprehensive smoke-free laws; and 3) Fully fund and sustain evidence-based, statewide tobacco prevention and cessation programs. Like a three-legged stool, each component works in conjunction with the others and all three are necessary to overcome this country s tobacco epidemic. ACS CAN and the Society work in partnership with state and local policymakers across the country to ensure that tobacco use is addressed comprehensively in each community. 4

7 Prevention Tobacco Excise Taxes State Cigarette Tax Rates Washington $3.025 California $0.87 Oregon $1.18 Nevada $0.80 Idaho $0.57 Utah $1.70 Montana $1.70 Wyoming $0.60 Colorado $0.84 North Dakota $0.44 South Dakota $1.53 Nebraska $0.64 Kansas $0.79 Minnesota $1.576 Iowa $1.36 Missouri $0.17 Arizona Oklahoma $2.00 New Mexico $1.03 Arkansas $1.66 $1.15 Wisconsin $2.52 Illinois $0.98 Mississippi $0.68 Indiana $0.995 Michigan $2.00 Kentucky $0.60 Tennessee $0.62 Alabama $0.425 Ohio $1.25 West Virginia $0.55 Georgia $0.37 Pennsylvania $1.60 North Carolina $0.45 South Carolina $0.57 Virginia $0.30 New York $4.35 Vermont $2.62 Maine $2.00 New Hampshire $1.68 Massachusetts $2.51 Rhode Island $3.46 Connecticut $3.40 New Jersey $2.70 Delaware $1.60 Maryland $2.00 District of Columbia $2.50 Alaska $2.00 Texas $1.41 Louisiana $0.36 Florida $1.339 Hawaii $3.20 Equal to or above $1.46 per pack Between $0.74 and $1.45 per pack How Do You Measure Up? Equal to or below $0.73 per pack As of 7/7/11 The Challenge By increasing taxes on cigarettes, cigars, little cigars, smokeless tobacco, and all other tobacco products (OTPs), states can save lives, reduce health care costs, and generate much-needed revenue. Evidence clearly shows that raising tobacco tax rates encourages tobacco users to quit or cut down and prevents kids from ever starting to smoke. In many states, cigarettes are taxed at a much higher rate than OTPs, making the lower-priced tobacco alternatives more appealing to youth. Due in part to the price differential, OTP usage rates among youth have increased in recent years. For example, smokeless tobacco use went up by 15 percent among youth ages between 2002 and 2009, or almost 600,000 youth. 1 Further compounding the issue, some OTPs, such as "orbs," look like candy and use flavorings to appeal to kids. Low taxes on these products in conjunction with tobacco companies' marketing practices make OTPs attractive to this population. Taxing OTPs at a rate comparable to cigarettes would help curb usage. Since the last publication of this report in July 2010, three states Connecticut, Hawaii, and Vermont have passed moderate cigarette tax increases, bringing the average state cigarette tax to $1.46 per pack. ACS CAN and the Society continue to advocate for increased excise taxes on cigarettes and other tobacco products and urge 5

8 Prevention A January 2010 national poll found that 67 percent of voters support a $1 increase in their state s tobacco tax. Support was strong among Democrats, Republicans, and Independents, as well as among voters of a broad range of demographic groups. The poll also found that voters far prefer higher tobacco taxes to other options for addressing state budget deficits, such as other tax increases or budget cuts. 5 The Solution Many state lawmakers have recognized the public health and economic benefits of tobacco tax increases, as evidenced by the fact that 14 states and the District of Columbia now have cigarette taxes of $2 or more per pack. Raising tobacco taxes minimizes the health consequences of smoking, reduces health care expenditures, and is a significant, stable, and predictable source of revenue in challenging fiscal times. legislators to reject any proposals to roll back tobacco taxes. In the past 10 years, only three states California, Missouri, and North Dakota have not raised their cigarette tax. Unfortunately, in the past year, at least seven states Louisiana, Michigan, New Hampshire, New Jersey, New York, Rhode Island, and Texas have proposed rollbacks or sunsets to their tobacco or OTP taxes. With the exception of New Hampshire, ACS CAN and the Society have so far defeated these proposed cuts which would have been harmful for both public health and the states economies in terms of decreased tax revenue and increased health care costs. The Facts The health and reduced productivity costs attributed to smoking are $10.47 per pack of cigarettes. 2 State cigarette excise tax rates vary widely, ranging from a high of $4.35 in New York to a low of $0.17 in Missouri. New York City has the highest combined city and state cigarette tax in the country, with a total tax of $4.85 per pack. For every 10 percent increase in the retail price of a pack of cigarettes, youth smoking rates drop by 6.5 percent and overall cigarette consumption declines by 4 percent. 3, 4 In June 2011, ACS CAN released a report, Saving Lives, Saving Money, highlighting the public health and economic benefits of increasing each state s cigarette tax by $1. The report includes data on the impact such an increase would have on the number of youth who would never start to smoke, the number of adults who would quit, and the number of lives that could be saved. A $1 per-pack state cigarette tax increase would reduce the number of smokers by thousands in every state. All told, the tax increase in every state Measuring Progress ACS CAN will soon be rolling out a new way to measure a state s progress in preventing cancer by reducing tobacco use. In addition to rating the states on a green, yellow, and red scale based on the state s tobacco tax rate, the new rating will also take into account the timeframe in which the state most recently raised its cigarette tax, with the benchmark being within five years, as well as the size of the increase. Research shows that the best way to curb tobacco use is through regular, significant increases in the price of cigarettes. This improved measurement will help us to better evaluate progress in saving lives and cutting health care costs. 6

9 Get the Facts: The Dangers of Cigars and Hookahs Tobacco is a deadly product in any form, and cigars and hookahs are no exception. Like all other tobacco products, cigars and hookah tobacco should be subject to taxation and regulations on manufacturing and marketing to reduce the deadly and costly burden of tobacco use. Cigars are smoked by more than 13 million Americans, 6 and their use is increasing. 7 Cigar smoking is the second most common form of tobacco use among youth, particularly boys. 8 Cigars are not safer than cigarettes, yet they are often regulated and taxed as if they were. In fact, regular cigar smokers are four to 10 times more likely to die from cancers of the mouth, larynx and esophagus than nonsmokers. 9 would lead 1.4 million adults to quit smoking, almost 1.7 million youth would never start smoking, and there would be 1.32 million fewer premature smoking-related deaths. In addition, the report details the potential revenue that would be raised, cost savings to the Medicaid program, and cost savings due to lower rates of lung cancer, heart attack, and stroke resulting from the lowered smoking rates. The report finds that tobacco tax increases will lead to significant health improvements and fiscal savings in every state. Increases in state revenue are estimated to be $8.62 billion. Savings from treating lung cancer alone are close to $200 million over five years. States could also reduce their smokingrelated Medicaid spending by $ million over five years. ACS CAN and the Society challenge states to raise taxes on both cigarettes and OTPs regularly by a significant percentage of the retail price. This will ensure consistently measureable health benefits from the increases. States with the lowest cigarette tax rates should aim for taxes that result in at least a 30 percent increase in the retail price of a pack of cigarettes. States should also raise taxes on OTPs to a similar percentage of the manufacturer's price as the tax on cigarettes. ACS CAN and the Society also encourage states to earmark tobacco tax revenues for tobacco prevention and cessation programs. Little cigars are often sold in cigarette-like packs, and tobacco companies decide on their size, shape, filters, flavors, and packaging to make them look like cigarettes. Yet, little cigars are typically taxed at a much lower rate than cigarettes. Because of the lower taxes, they cost much less than cigarettes in many states, making them more affordable and attractive to younger smokers. Hookah tobacco, or water pipe tobacco, smoking delivers the same addictive drug nicotine and is at least as toxic as cigarette smoke. 10 The norms of hookah smoking, which include more frequent puffing, deeper inhalation, and longer smoking sessions than cigarette smoking, may result in hookah smokers absorbing higher concentrations of the toxins found in cigarette smoke. 11 Waterpipe tobacco is often sweetened and flavored to make it particularly appealing, especially to young people. 12 It is important that taxes on hookah be increased to levels that are comparable to cigarette taxes, based on the percentage of the manufacturer s price, to prevent young people from using the deadly product. 7

10 Prevention Smoke-Free Laws Smoke-Free Legislation at the State, County, and City Level In effect as of July 1, 2011 Washington California Oregon Nevada Idaho Arizona Montana North Dakota Maine Vermont Minnesota South Dakota New Hampshire New York Massachusetts Wyoming Wisconsin Michigan Rhode Island Connecticut Nebraska Iowa Pennsylvania New Jersey Indiana Utah Illinois Ohio Delaware Maryland Colorado West Kansas Virginia Virginia Missouri District of Columbia Kentucky North Carolina Tennessee Oklahoma New Mexico Arkansas South Carolina Alabama Georgia Alaska Texas Louisiana Mississippi Florida Rhode Island Connecticut New York New Jersey Hawaii Commonwealth of Northern Mariana Islands Delaware American Samoa Puerto Rico Local Laws with 100% Smoke-free State and Commonwealth/Territory Law Type Non-Hospitality Workplaces, Restaurants, and/or Bars 100 percent smoke-free in non-hospitality workplaces, restaurants, and bars U.S. Virgin Islands How Do You Measure Up? Guam County has passed smoke-free laws City has passed smoke-free laws 100 percent smoke-free in one or two of the above No 100 percent smoke-free state law Note: American Indian and Alaska Native sovereign tribal laws are not reflected on this map. Source: American Nonsmokers' Rights Foundation U.S. Tobacco Control Laws Database(c), 07/01/11 The Challenge The 2010 Surgeon General s Report, How Tobacco Smoke Causes Disease: The Biology and Behavioral Basis for Smoking Attributable Disease, and the 2006 Surgeon General s Report, The Health Consequences of Involuntary Exposure to Tobacco Smoke, confirm that there is no safe level of exposure to secondhand smoke. 1, 2 Each year in the United States, secondhand smoke causes approximately 50,000 deaths from heart disease and cancer among nonsmokers. Secondhand smoke also can cause or exacerbate a wide range of other adverse health issues, including respiratory infections and asthma. Secondhand smoke is a serious health hazard, containing more than 60 known or probable carcinogens and more than 4,000 substances, including formaldehyde, arsenic, cyanide, and carbon monoxide. As of July 1, 2011, 35 states, the District of Columbia, Puerto Rico and 949 municipalities require 100 percent smoke-free workplaces and/or restaurants and/or bars. Combined, this represents nearly 80 percent of the U.S. population. 3 According to a 2011 report by the CDC, if current progress continues, all states could have comprehensive smoke-free policies by However, this will require accelerated progress in parts of the country where there are no comprehensive smoke-free laws in effect. 4 Currently, 15 states still have no comprehensive statewide smoke-free laws in place for all workplaces, restaurants, or bars. 8

11 Despite major legislative advances over the past decade, certain segments of the population, such as hospitality and casino workers, continue to be denied their right to breathe smoke-free air. Low-income individuals are especially vulnerable. While the levels of serum cotinine, which is a measure of secondhand smoke exposure, decreased for all populations from to , the decline was smaller among low-income individuals. 5 At least 88 million nonsmoking individuals in the United States remain exposed to secondhand smoke. 6 The Facts Smoke-free laws reduce exposure to cancer-causing pollutants and reduce the incidence of disease. 7 Smoke-free laws encourage smokers to quit, increase the number of successful quit attempts, and reduce the total number of cigarettes smoked. 8, 9 Smoke-free laws reduce health care spending and improve employee productivity. 10 The Solution The best way to reduce exposure to secondhand smoke is to make public places, including all workplaces, restaurants, and bars, 100 percent smoke-free. The Institute of Medicine and the President s Cancer Panel recommend that comprehensive smoke-free laws cover all workplaces, including restaurants, bars, hospitals and health care facilities, gaming facilities, and correctional facilities. 11, 12 Implementing comprehensive smoke-free policies will have immediate health benefits for all individuals, especially those most at risk, such as those with cancer, heart disease, and asthma, as well as casino, restaurant, and bar workers. Across the country, elected officials at the state and local levels are recognizing the health and economic benefits of comprehensive smoke-free laws. However, despite the evidence about the positive impact of smoke-free laws on people s health, legislators in several states are considering repealing or weakening existing smoke-free laws by adding exemptions for places such as cigar bars, hookah bars, and casinos. ACS CAN and Society advocates are fighting for the health of all workers and have successfully maintained strong laws in a majority of the states in which comprehensive smoke-free laws have been challenged. ACS CAN and the Society urge state and local officials to pass or maintain comprehensive smoke-free laws in all workplaces, restaurants, bars, and gaming facilities in order to protect the health of all employees and patrons. Policymakers are also encouraged to overturn and prevent preemption laws that restrict a lower level of government from enacting stronger smoke-free laws than what exist at a higher government level in a state. Everyone has the right to breathe smoke-free air. 9

12 Prevention The Red to Green Campaign ACS CAN continues to work on its nationwide Red to Green initiative, which was first launched in late 2009, to build a smoke-free nation. The initiative is named to reflect the colors of the ACS CAN smoke-free ratings map with red indicating states with no law requiring 100 percent smoke-free workplaces, restaurants, or bars, and green indicating states protected by 100 percent smoke-free laws in all three categories. Red to Green is a coordinated effort led by ACS CAN across the red states to enact smoke-free laws strategically, beginning at the local level and eventually statewide.the campaign builds on ACS CAN and the Society s fight to enact comprehensive smoke-free laws in every state. Just 18 months into the campaign, four states, three of which were initially red, have gone smoke-free. Kansas, Michigan, and Wisconsin moved their states from red to green, and South Dakota s new law turned the state from yellow to green. Despite these recent successes, the fight is ongoing as opponents are relentlessly working to repeal or weaken strong smoke-free laws. ACS CAN and Society advocates, together with their coalition partners, must continue to work hard to stave off attempts to rollback existing laws, further demonstrating the importance of a sustained campaign initiative. In June 2011, as part of its Red to Green campaign,acs CAN released a first-of-its-kind report highlighting the public health and economic benefits of implementing 100 percent smoke-free laws in each state that lacks a comprehensive law. The data show that comprehensive smoke-free laws would decrease the number of adult smokers by tens of thousands in many states. If every state without a comprehensive smoke-free law enacted one, nearly 400,000 fewer young people would become smokers, and there would be approximately 624,000 fewer smoking-related deaths among smokers and 70,000 fewer smoking-related deaths among nonsmokers. Implementing smoke-free laws would also save states hundreds of millions of dollars in reduced health care costs. Across the 27 states without a comprehensive law in place, this totals $ million in lung cancer treatment savings, $ million in heart attack and stroke savings, $ million in smoking-related pregnancy treatment savings, and almost $43 million in state-funded Medicaid program costs. For states that already have a comprehensive law, the report highlights the law s successes and the need to protect strong laws against rollbacks and exemptions. Tough battles lie ahead in the fight to enact the next wave of statewide smoke-free laws and protect current laws, but with the Red to Green initiative providing advocates with the knowledge and resources needed to win, a smoke-free nation is within reach by

13 Success Story In 2009, the South Dakota legislature passed a strong smoke-free law making all indoor workplaces, including restaurants, bars, video lottery establishments, and casinos, 100 percent smoke-free. Before the law was scheduled to take effect on July 1, 2009, opponents filed a petition to keep it from taking effect and placed it on the ballot. ACS CAN and Society staff and volunteers led get-out-the-vote efforts and in November 2010, South Dakota voters approved the smoke-free proposition by 64 to 36 percent. The law went into effect on November 10, 2010, protecting nearly every worker in South Dakota from exposure to secondhand smoke. In the state of Washington, ACS CAN volunteers and staff successfully defeated a bill that would have weakened the state's strong smoke-free law by allowing special licenses or smoking permits for 100 cigar lounges and 500 retail tobacco shops to allow smoking. If passed, the measure would have exposed thousands of Washington workers to the dangers of secondhand smoke. Get the Facts: Cigar and Hookah Smoke Tobacco smoke is deadly in any form. Just like smoke from cigarettes, smoke from cigars and hookahs can cause disease and death in smokers and nonsmokers alike. Therefore, comprehensive smoke-free laws should include cigar and hookah bars, clubs, and retail stores. Cigars contain the same cancer-causing substances found in cigarettes and are not a safe alternative to cigarettes. Cigar smoking is associated with an increased risk for cancers of the lung, esophagus, larynx, and oral cavity (lip, tongue, mouth, throat). Secondhand smoke from cigars contains the same, or even greater, levels of toxic chemicals as secondhand cigarette smoke and carries the same increased risks for cancer and cardiovascular disease among adults. 13 In fact, cigars often burn for longer periods of time, which leads to more secondhand smoke in the air. At the same time, to the extent that cigar smoke is not inhaled as deeply as cigarette smoke, secondhand cigar smoke is also less filtered than secondhand cigarette smoke before nonsmokers are exposed to it. Hookahs, or waterpipes, produce secondhand smoke with significant amounts of cancer-causing ingredients, such as arsenic, cobalt, chromium, and lead, posing a serious risk for nonsmokers. The norms of hookah smoking, which include more frequent puffing, deeper inhalation, and longer smoking sessions than cigarette smoking, may result in hookah smokers absorbing higher concentrations of the toxins found in cigarette smoke. In fact, a typical one-hour hookah smoking session involves inhaling times the volume of smoke inhaled from a single cigarette. Some state and local laws prohibiting smoking in workplaces, restaurants, and bars include exemptions for cigar and hookah bars, clubs, or retail stores. These types of tobacco workplaces have been increasing in states and localities with comprehensive smoke-free laws, reducing the laws public health impact. It is essential that workers and patrons at cigar and hookah bars, clubs, and retail stores receive the same protection from the dangers of secondhand smoke as workers and patrons in other venues who are protected by strong smoke-free laws. 11

14 Prevention Tobacco Cessation Services The Challenge Public health experts have long supported proven strategies to prevent children and adults from smoking and get smokers to quit. States with comprehensive tobacco control programs that include cessation services for a wide scope of their population experience faster declines in cigarette sales, smoking prevalence, and lung cancer incidence and mortality than states that do not invest in these programs. Only five states currently provide comprehensive cessation coverage for state employees and in 26 states, co-pays are required for every cessation-related prescription filled or every cessation counseling visit. In Medicaid programs, only 19 states cover both cessation drugs and counseling services for all beneficiaries, and just six of these states cover all the cessation treatments the U.S. Public Health Service recommends. In 21 states and DC, Medicaid programs limit the length of tobacco treatment programs that are covered, and 18 states restrict the number of quit attempts covered in a year. 1 Evidence In October 2010, an important provision of the Affordable Care Act went into effect that requires all states to provide cessation benefits to pregnant women in Medicaid; however, some states have yet to initiate and fund this critical coverage requirement. 12

15 shows that administrative barriers like co-pays, preauthorization requirements, and administrative red tape can deter people from utilizing preventive services, such as cessation treatment. The Facts Evidence-based treatments for smoking cessation are safe and can double or triple successful quit attempts. 2 Including cessation services as a covered health benefit increases quit rates by 30 percent. 3 Providing both medication and professional counseling in cessation treatments increases quit rates by 40 percent. 4 Smokers and other tobacco users need access to a range of treatments and combinations of treatments to find the most effective cessation tools that work for them. Quitlines can increase quit success more than 50 percent, compared to using no cessation intervention. 5 The Solution Implementing cessation benefits to state employees, Medicaid beneficiaries, and all other smokers, and having these benefits cover a range of treatment options, will curb states tobacco-related death and disease. Covering all population groups through insurance plans is critical, especially for low-income populations that need it most. Throughout the implementation phase of the Affordable Care Act, ACS CAN and the Society will be working to ensure that a full range of cessation services is covered at all levels of benefits and in all plans. ACS CAN and the Society believe that such benefits should be comprehensive and offered to all Medicaid beneficiaries, state employees, and those with private health insurance. Affordable Care Act Cessation Provisions: States can choose to include cessation services (graded A by the U.S. Preventive Services Task Force) in Medicaid benefits and receive a 1 percent increase in federal matching funds for these services starting in States were required to begin covering cessation services for all pregnant Medicaid beneficiaries starting on October 1, 2010.These services must be provided without cost sharing. As of September 23, 2010, private insurance plans formed under new state health insurance exchanges are required to provide cessation services as part of the preventive services in the essential benefits package. Regulations have not yet been issued on what the cessation services will need to include. The Prevention and Public Health Fund provides grants to states for quitlines and other tobacco control activities. In 2011, the Fund distributed $750 million to states, communities, and public health entities for tobacco control and other prevention and public health programs. 13

16 Prevention Tobacco Control Program Funding The Challenge The level of funding and the emphasis states place on proven prevention and cessation programs over time directly influence the health and economic benefits of tobacco control. Comprehensive, adequately funded tobacco control programs reduce tobacco use and tobaccorelated disease, resulting in reduced tobacco-related health care costs. Unfortunately, states currently spend only a small percentage of the revenues from tobacco taxes and Master Settlement Agreement (MSA) payments on tobacco control programs. While $261.6 million in federal grants to reduce tobacco use has been made available to states through various agencies and programs, 6 some of the funding includes one-time grants and not all of it will be available in FY When federal and state funds are counted together, Alaska and North Dakota are the only two states currently funding their tobacco prevention programs above CDC-recommended levels. Only seven states are funding at even half of the CDC s recommended spending levels. 7 In fiscal year 2011 (FY 2011), the states budgeted $517.9 million for tobacco prevention and cessation programs, the smallest amount since they began receiving tobacco settlement payments in This is only 4 percent of the $12.8 billion per year 2 that tobacco companies spend to market their products. Since the beginning of FY 2011, several states have cut their tobacco control programs even further. Some states have even eliminated funds for their programs altogether. At the same time, many states are facing deep cuts in tobacco control funding or the diversion of MSA dollars away from tobacco control programs. The drop in funding threatens the viability of state tobacco control programs that promote the health of residents, reduce tobacco use, and provide services to help people quit. The Facts Health care costs from tobacco-related disease total approximately $96 billion in the United States each year. 3 The $517.9 million that states budgeted for tobacco prevention and cessation programs in FY 2011 is only 2 percent of the $25.3 billion in revenue that they are collecting from the tobacco settlement and tobacco taxes. 4 The CDC recommends that states spend at least $3.7 billion per year on tobacco control programs. In total, states have budgeted only 14 percent of the recommended $3.7 billion for tobacco prevention programs. 5 If each state maintained target funding levels for five years, there would be an estimated five million fewer smokers in the United States. 8 Missed Opportunity U.S. tobacco industry marketing expenditures have increased 85 percent since the MSA, 9 with the tobacco industry spending approximately $12.8 billion per year to market their deadly products nearly 25 times the amount that states spend to prevent kids from smoking and help smokers quit. States are expected to receive $25.3 billion in tobacco taxes and settlement payments in FY 2011 less than 15 percent of this total could fund tobacco control programs at CDC-recommended levels in every state. 10 Unfortunately, states currently direct only 2 percent of these funds to tobacco control programs. The Solution The CDC s Best Practices for Comprehensive Tobacco Control Programs continues to be an effective guideline for state investment in tobacco control. 11 To succeed, programs should consist of the following five components: Multimedia communications that stress the dangers of tobacco use and act as a counter-weight to the tobacco industry s aggressive marketing practices. Interventions that support smokers and other tobacco users efforts to quit, such as tobacco use screening, telephone counseling, and other policies to increase cessation rates. 14

17 FY 2011 State Funding for Tobacco Prevention Washington Oregon Montana North Dakota Minnesota Vermont Maine California Nevada Idaho Utah Wyoming Colorado South Dakota Nebraska Kansas Wisconsin Iowa Illinois* Missouri Indiana Michigan Kentucky Ohio West Virginia Pennsylvania Virginia New York New Jersey Delaware Maryland New Hampshire Massachusetts Rhode Island Connecticut District of Columbia Arizona New Mexico Oklahoma Arkansas Tennessee North Carolina South Carolina Mississippi Alabama Georgia Texas Louisiana Alaska Florida Hawaii Spending 50% or more of the CDC recommended funding level Spending 25-49% of the CDC recommended funding level How Do You Measure Up? Spending less than 25% of the CDC recommended funding level Source: Robert Wood Johnson Foundation, Campaign for Tobacco-Free Kids, American Cancer Society Cancer Action Network, American Heart Association, and American Lung Association. A Broken Promise to Our Children: The 1998 State Tobacco Settlement 12 Years Later. November Available at Current annual funding includes state funds for FY2011 and does not include federal funds directed to states. Community-based and statewide policies and programs that promote healthy behaviors. Monitoring and evaluation of policies and interventions to assess health outcomes and program effectiveness. Staff, infrastructure, and program management resources to implement programs effectively and ensure their financial and organizational integrity. ACS CAN and the Society challenge states to combat tobacco-related illness and death by funding comprehensive tobacco control programs at the CDC-recommended level or above; implementing strategies to continue that funding over time; and applying the specific components delineated in the CDC s best practices guideline. ACS CAN and the Society urge legislators to resist sacrificing tobacco prevention and cessation programs in tough economic times as short-term budgetary fixes and to instead consider the long-term health and economic burden that such cuts will ultimately put on the state. Success Story Montana has long been recognized as a leading state in tobacco prevention. In the past, both the state legislature and voters have supported efforts to increase tobacco control program funding and tobacco taxes. This 15

18 Prevention State Tobacco Prevention Spending State State s FY2011 Tobacco Prevention Spending (millions) CDC-Recommended Spending (millions) State Tobacco Prevention Spending % of CDC Recommended Alaska North Dakota Hawaii Montana Wyoming Delaware Maine $9.8 $8.2 $9.3 $8.4 $5.4 $8.3 $9.9 $10.7 $9.3 $15.2 $13.9 $9.0 $13.9 $ % 88.1% 61.1% 60.4% 60.0% 59.5% 53.5% Oklahoma Vermont Minnesota Arkansas South Dakota Utah New Mexico Florida Arizona Mississippi $21.7 $4.5 $19.6 $11.8 $3.5 $7.1 $7.0 $61.6 $19.8 $9.9 $45.0 $10.4 $58.4 $36.4 $11.3 $23.6 $23.4 $210.9 $68.1 $ % 43.4% 33.6% 32.4% 31.0% 30.2% 29.8% 29.2% 29.1% 25.3% legislative session, however, proved to be a challenge. High turnover in the legislature, coupled with budget difficulties and a strong tobacco lobby, put the Montana Tobacco Use and Prevention Program at risk in Despite a recent voter opinion poll showing 80 percent support for the Montana Tobacco Use Prevention Program, the Montana state legislature voted to drastically cut funding for the program in Through the Project Pink Lungs campaign, ACS CAN and coalition advocates sprang into action to fight the cuts with action alerts, advertising, media outreach, patch-through calls, directmail campaigns, and volunteer lobby days. The well-organized and strategic campaign paid off when Governor Schweitzer vetoed the legislation that would have permanently eliminated the Montana Tobacco Use Prevention Program. The governor also partially restored funding for the program at $4.7 million per year for the next two years out of the $8.2 million per year at which the program was previously funded. It is important to recognize that the Montana program does not meet the minimum funding level recommended by the CDC and will not save the number of Montanans that could be saved, but the program will continue to provide a foundation for future restoration to get to CDC-recommended levels. New York West Virginia Iowa Washington North Carolina California Louisiana Oregon Nebraska Colorado Indiana Wisconsin Pennsylvania Virginia Idaho South Carolina Maryland Illinois DC Massachusetts Rhode Island Kentucky Texas Kansas Michigan Georgia Alabama Connecticut New Jersey Tennessee Missouri New Hampshire Nevada Ohio $58.4 $5.7 $7.3 $13.4 $18.3 $75.0 $9.0 $7.1 $2.9 $7.0 $9.2 $6.9 $14.7 $9.4 $1.5 $5.0 $4.3 $9.5 $0.57 $4.5 $0.74 $2.6 $11.4 $1.0 $2.6 $2.0 $0.86 $0.40 $0.60 $0.22 $0.06 $0 $0 $0 $254.3 $27.8 $36.7 $67.3 $106.8 $441.9 $53.5 $43.0 $21.5 $54.4 $78.8 $64.3 $155.5 $103.2 $16.9 $62.2 $63.3 $157.0 $10.5 $90.0 $15.2 $57.2 $266.3 $32.1 $121.2 $116.5 $56.7 $43.9 $119.8 $71.7 $73.2 $19.2 $32.5 $ % 20.4% 20.0% 19.8% 17.1% 17.0% 16.9% 16.6% 13.3% 12.9% 11.7% 10.7% 9.5% 9.1% 8.9% 8.0% 6.9% 6.1% 5.4% 5.0% 4.8% 4.5% 4.3% 3.1% 2.1% 1.8% 1.5% 0.9% 0.5% 0.3% 0.1% 0.0% 0.0% 0.0% Source: Robert Wood Johnson Foundation, Campaign for Tobacco-Free Kids, American Cancer Society Cancer Action Network, American Heart Association, and American Lung Association. A Broken Promise to Our Children: The 1998 State Tobacco Settlement 12 Years Later. November Available at 16 Current tobacco prevention spending includes state funds for FY2011 and does not include federal funds directed to states.

19 Prevention Indoor Tanning Devices and Skin Cancer The Challenge The Facts Skin cancer is the most prevalent type of cancer in the United States, with melanoma being one of the most commonly diagnosed cancers among young adults. Ultraviolet (UV) radiation exposure from the sun is a known cause of skin cancer, and excessive UV exposure, particularly during childhood and adolescence, is an important predictor of future health consequences. The link between UV exposure from indoor tanning devices and melanoma is consistent with what we already know about the association between UV exposure from the sun and skin cancer. Because of this, in 2009 the International Agency for Cancer Research reclassified indoor tanning devices as having the highest level of cancer risk. 1 There has been a drastic increase in rates of melanoma in young, white women over the past few decades. The increase is widely thought to be a consequence of elevated use of indoor tanning devices and exposure to solar UV radiation. Compounding this risk is the popularity of indoor tanning among young adults especially girls. There is also a general misconception among teens and adults that a so-called base tan, obtained by using indoor tanning devices, will have a protective effect from excessive sun exposure. Twenty-six states currently regulate the use of indoor tanning devices by people under the age of 18, although policies vary widely by state. Melanoma is the most deadly of skin cancers accounting for most of the more than 8,700 skin cancer-related deaths in People who use tanning beds before the age of 35 increase their risk for melanoma by 75 percent. 3, 4 Since 1998, teens reporting use of tanning beds has increased from 1 percent to 27 percent. 5 In 2009, more than one in five girls reported using indoor tanning devices. 6 Among kids who reported using indoor tanning devices, more than half (57.5 percent) reported burns from use. 7 The Solution To help reduce the incidence of and mortality from skin cancer in the United States, ACS CAN and the Society support state and local initiatives to prohibit the use of indoor tanning devices by those under the age of 18, ensure that all consumers are properly informed of their risk prior to use, and require all indoor tanning devices to be properly regulated with effective enforcement provisions in place. ACS CAN and the Society also urge the FDA to reclassify indoor tanning devices to provide the restrictions and oversight necessary to protect the public from the dangers of indoor tanning. 17

20 Prevention Obesity, Nutrition, and Physical Activity The Challenge For the majority of Americans who do not use tobacco, the greatest modifiable determinants of cancer risk are weight control, dietary choices, and physical activity. Nearly one in three cancer deaths are due to factors relating to nutrition and physical activity, including overweight and obesity. 1 Being overweight or obese increases the risk for developing several types of cancers, including breast (postmenopausal), colon, endometrium, esophagus, and kidney. In addition, observational studies show that obesity increases the risk for cancers of the pancreas, gallbladder, thyroid, ovary, and cervix, and for multiple myeloma, Hodgkin lymphoma, and aggressive prostate cancer. 2 Approximately two in three adults and one in three youth in this country are overweight or obese more than double the rate from just 20 years ago. The rates of overweight and obesity among racial and ethnic minorities are even higher. 3, 4 A majority of Americans also do not get the 150 minutes of physical activity per week that the American Cancer Society and the federal Physical Activity Guidelines for Americans recommend. Earlier this year, the U.S. Department of Health and Human Services and the U.S. Department of Agriculture released new Dietary Guidelines and the corresponding My Plate symbol to replace the Food Pyramid. The new Dietary Guidelines recommend that Americans consume less solid fat and added sugars and more fruits, vegetables, and whole grains, while consuming less food overall. The majority of Americans have diets that do not align with these or the American Cancer Society s nutrition recommendations for cancer prevention. The rapid increase in overweight and obesity over the past two decades can be attributed primarily to environmental and social changes. Many communities lack the pedestrianfriendly infrastructure, such as sidewalks and parks that facilitate daily physical activity among children and adults. Additionally, far too many communities fail to provide access to supermarkets with healthy, affordable food options, and instead have an overabundance of fast food restaurants with inexpensive, unhealthy foods. Also, due to technological advances, fewer jobs require physical activity, and Americans are spending more leisure time in front of computers, televisions, and other electronic devices. Together, all of these environmental and social factors have contributed to the overweight and obesity epidemic in our country. Increasing opportunities for and promoting physical activity and healthy food choices offers a critical opportunity for cancer prevention. The Facts 32.2 percent of men and 35.5 percent of women ages 20 and older are obese. 5 Racial and ethnic minority groups have been hardest hit. African-American women have a 28 percent greater risk of overweight or obesity and a 50 percent greater risk of obesity than white women. Hispanic men and women have a 14 percent greater risk of overweight and obesity than white men and women. 6 Among children and adolescents ages 2-19, 16.9 percent are obese. In the 1970s, only 5 percent of youth were obese. 7 These statistics are especially concerning because a large majority of adolescents who are overweight will remain so into adulthood. One in four individuals does not engage in physical activity during their leisure time. 8 18

21 The current Dietary Guidelines for Americans recommends that half of one s plate should be fruits and vegetables. Only 32.8 percent of adults eat two or more servings of fruit per day and only 27.4 percent eat three or more servings of vegetables. Even fewer 14 percent eat those amounts of fruits and vegetables daily. 9 In addition to increasing the risk for cancer and other chronic diseases, overweight and obesity place a huge financial burden on the health care system in the United States. Obesity alone costs the nation $147 billion in direct medical costs each year. 10 The Solution Experts agree that policies promoting healthier communities through activity accessibility and dietary choices are the most promising methods for reducing the high rates of overweight and obesity. The American Cancer Society Guidelines on Nutrition and Physical Activity for Cancer Prevention, 11 as well as the CDC, 12 the Institute of Medicine, 13 the White House, 14 and the 2010 Dietary Guidelines 15 recommend making healthy choices easier meaning healthy foods should be more available and affordable and physical activity should be more easily incorporated into one s daily life. Several laws are already on the books that focus on improving nutrition, increasing physical activity, and reducing obesity. These laws have numerous state and local implications. In December 2010, President Obama signed into law the Healthy, Hunger-Free Kids Act, which reauthorized child nutrition programs and made numerous changes to improve school nutrition. The law set national nutrition standards for school meals and other foods sold in schools; however, it does not preempt states or localities that wish to set stronger nutrition standards from doing so. The law also requires school districts to update and strengthen their wellness policies. Local wellness policies must include goals for nutrition education, physical activity, nutrition standards for foods sold in schools, and other school-based wellness activities; be developed with input from a broad group of 19

22 Prevention stakeholders; and be widely disseminated throughout the community. ACS CAN and the Society recommend a range of evidencebased strategies to promote healthy living and reduce barriers to good nutrition: Setting strong standards for all foods sold in schools and other venues for youth, including afterschool and summer programs and day care centers. Incorporating nutrition education into school activities whenever possible. Establishing effective statewide requirements for the amount of time students must spend in physical education complete with standards for quality instruction. Physical activity should also be incorporated into other activities whenever possible. Bringing together the resources of schools, communities, and families to support the local implementation of coordinated school health, an evidence-based approach for improving students health and learning in schools and put in place through interrelated policy and programs targeting critical components of school health, including physical education, health education, a healthy school environment, nutrition services, and staff wellness. Increasing access to affordable, healthy foods through support for the development of supermarkets, farmers markets, and community gardens in areas where such venues are lacking. Reducing the marketing of unhealthy foods to youth, particularly in schools. Supporting the development of safe infrastructure for physical activity, including bike lanes, sidewalks, biking and walking paths, parks, and playgrounds. Providing coverage for screening, counseling, and behavioral treatment for overweight and obesity for all Medicaid program participants. Implementing a comprehensive worksite wellness program for state employees that does not link participation or health status to health insurance premiums and encouraging private sector employers to do the same. 20

23 Ultimately, it is up to state and local community leaders and policymakers to improve the health and well-being of their residents by making the changes necessary to improve nutrition, increase physical activity, and reduce obesity. One area in particular where states can implement strong policies is in physical education. Physical education promotes physical activity among youth, provides students with the knowledge and skills that they need to be physically active throughout their lifetime, and may even increase students academic achievement. 16, 17, 18 ACS CAN and the Society recommend the following strategies to improve quality physical education in schools: Require all school districts to develop and implement a planned K-12 physical education curriculum that adheres to national standards including a minimum of 150 minutes per week in elementary school and a minimum of 225 minutes per week in middle and high schools. Prohibit students from opting out of physical education to prepare for other classes or standardized tests. Disallow waivers or substitutions for physical education. Students should not be permitted to substitute activities such as sports, ROTC, marching band, or recess for physical education. Hire a state-level physical education coordinator to provide resources and offer support to school districts throughout the state. Make physical education a prerequisite for graduation and count the physical education grade as part of a student's overall grade point average. Multifaceted policy approaches across a population can significantly enhance nutrition and physical activity and reduce obesity rates by removing barriers, changing social norms, and increasing awareness. ACS CAN and the Society stand ready to work with state and local policymakers to plan, implement, and evaluate these strategies and move the nation toward a healthier future with less cancer. Missed Opportunity During the 2011 legislative session, Virginia Sen. Ralph Northam and Del. John O Bannon led the charge to pass legislation that would have required all students in kindergarten through eighth grade to receive 150 minutes per week of physical education. The Virginia General Assembly passed Senate Bill 966 before Governor Bob McDonnell ultimately vetoed it. Required daily physical education is an important step to reducing the epidemic of childhood obesity. Despite the Governor s veto, the overwhelming support for this legislation marks significant progress in the fight against childhood obesity. ACS CAN and the Society look forward to working with our legislative champions and partner organizations toward successful passage and implementation of this legislation, with the inclusion of all students, in Offer regular professional development opportunities to physical education teachers to ensure they are highly qualified and certified. Add valid fitness, cognitive, and affective assessments in physical education that are based on student improvement and knowledge gain. Require that students engage in moderate to rigorous physical activity for at least 50 percent of physical education class time. Provide physical education programs with appropriate equipment and adequate facilities. 21

24 Coverage Increasing Access to Care For decades, our nation s health care system failed to meet the needs of people with cancer, many of whom were denied coverage, offered inadequate policies that did not cover pre-existing conditions, or charged far more than they could afford for the care they needed. As of March 2010, that began to change with the enactment of the Affordable Care Act, which includes numerous provisions that are improving the health care system for people with cancer and their families. The law is complicated, and it is far from perfect, which makes it extremely important to implement provisions of the law as strongly as possible for people with cancer. Much of the work of implementation will fall to the states. Provisions in the Affordable Care Act have the potential to dramatically improve the way that consumers and patients utilize the health care system. Beginning in 2014, each state will offer a health benefit exchange, an online marketplace that will enable consumers to compare health insurance plans and choose the one that is best for them and their families. States must also ensure that their insurance markets conform to other provisions of the Affordable Care Act, including those that guarantee the issuance of insurance to all individuals regardless of their health status, prohibit insurance companies from charging people more for coverage simply because they are sick, and ban pre-existing condition exclusions. Throughout this section, ACS CAN will detail how states can best address the needs of cancer patients as they begin the important work of setting up their health benefit exchange. Beginning in 2014, the Affordable Care Act also improves access to health care for our nation s most vulnerable populations by expanding the Medicaid program. Millions of low-income people with cancer and other lifethreatening chronic diseases depend on Medicaid for the health care they need, but fiscal challenges have caused many states to consider cutting funding and limiting eligibility for this important program. The following pages outline the steps states can take to keep Medicaid strong so low-income people have access to the full range of cancer prevention and early detection tests, treatment, and follow-up care. Another key provision of the law requires all group and individual health insurance plans to pay for routine patient care costs associated with participation in clinical trials. Enrollment in clinical trials is currently low, especially among racial and ethnic minority populations for whom concerns about coverage for routine costs can be a barrier to participation. This provision, which goes into effect in 2014, will enable more people with cancer to participate in cutting edge clinical trials that drive the development of innovations to improve cancer care and patient quality of life. Provisions of the Affordable Care Act are improving the care that cancer patients and their families receive. ACS CAN and the Society are available to work with state policymakers across the country to help implement those provisions and ensure that health care is available, affordable, adequate, and administratively simple for everyone with cancer or at risk for cancer. 22

25 Coverage Creating Consumer-Friendly State Health Exchanges Benchmarking State Health Exchange Laws Washington Oregon Montana North Dakota Minnesota Vermont Maine California Nevada Idaho Utah Wyoming Colorado South Dakota Nebraska Kansas Wisconsin Iowa Illinois Missouri Indiana Michigan Kentucky Ohio West Virginia Pennsylvania Virginia New York New Jersey Delaware Maryland New Hampshire Massachusetts* Rhode Island Connecticut District of Columbia Arizona New Mexico Oklahoma Arkansas Tennessee North Carolina South Carolina Mississippi Alabama Georgia Texas Louisiana Alaska Florida Hawaii How Do You Measure Up? Exchange legislation signed into law. Exchange legislation passed one or both houses. Governor has issued an Executive Order or has signed legislation signaling a move forward without passing exchange legislation. Legislative proposals failed to pass either house. No exchange activity. The map depicts state health exchange activity through June Sources: Health Policy Tracking Service & Individual state bill tracking services *Both Massachusetts and Utah established health benefit exchanges prior to The Massachusetts exchange is very similar to what is required by the Affordable Care Act, however the Utah exchange will need to make legislative changes in order to be certified as an Affordable Care Act exchange. The Challenge With the passage of the Affordable Care Act in March 2010, states are beginning to set up health benefit exchanges and Small Business Health Options Program (SHOP) exchanges. The exchanges will serve as the central marketplace where consumers can compare and buy health insurance plans in the individual and small group markets. Under the Affordable Care Act, states must be on track to receive certification for their exchange from the U.S. Department of Health and Human Services by January 1, The federal government will operate exchanges in states that choose not to create one. Provisions in the Affordable Care Act establish minimum standards for setting up state exchanges, providing considerable flexibility for states as to their structure. For example, instead of having two separate exchanges, states may choose to merge the individual and small group exchanges to create a larger pool over which to spread risk. How states choose to exercise this flexibility will have significant implications for cancer patients who use this coverage. If not implemented and operated appropriately, the exchanges could result in increased costs for consumers. Past experience with exchanges has been disappointing, largely because they have attracted sicker and more costly enrollees, or have been unable to draw sufficient 23

26 Coverage numbers of people for plans to remain viable. Massachusetts experience with health insurance exchanges has been the exception, primarily because the law ensures a large pool of enrollees and gives the exchange the authority to negotiate with insurance companies. The new health insurance exchanges are critical to ensuring that cancer patients will have available, affordable, adequate, and administratively simple health care coverage. For cancer patients and their families to experience real change in their ability to purchase quality health care coverage, state policymakers must tackle the challenges related to the design, implementation, and governance of these new exchanges. The Facts More than 20 million people under age 65 are expected to purchase health insurance through state exchanges. 1 Sixty-five percent of individuals expected to purchase health insurance through the exchange will have been previously uninsured. 2 According to a recent ACS CAN poll of families affected by cancer, more than two-thirds of those under 65 who tried finding an affordable health insurance plan on their own were unable to do so. 3 More than 80 percent of those buying coverage in state exchanges are expected to receive subsidies. 4 The Solution Six key issues must be addressed to ensure that the exchanges are an attractive marketplace for consumers as states consider how to create and implement an exchange. ACS CAN and the Society use the following questions to evaluate proposed legislation on exchanges. 1. Is the exchange governance board properly structured to ensure that its decisions serve the best interest of consumers, patients, workers, and small employers? The governance board will make the critical management and policy decisions that determine the direction and success of the exchanges. It is important that the members have appropriate management experience and authority to successfully make critical administrative decisions. It is imperative that board members not have a conflict with their business or professional interests. Other stakeholders, including patients and consumers, are best involved through advisory boards. Finally, the governance board must be held publicly accountable through open meeting laws and solicitation of public comments. 2. Do the rules for the insurance market outside the exchanges complement those inside the exchange to mitigate adverse selection? Insurance rules for plans inside and outside of the exchanges should be comparable and promote a level playing field. If plans outside the exchanges can sell products under more favorable terms, those plans can cherry pick the healthiest consumers, with the exchanges ultimately becoming an insurance pool of primarily high-risk individuals. This would result in high and potentially unaffordable insurance premiums for those consumers who need care the most. 3. Are state Medicaid programs well-integrated with the exchanges? Under the Affordable Care Act, all individuals with incomes under 133 percent of the federal poverty level are eligible for coverage under Medicaid. The exchanges are responsible for screening and enrolling eligible people in the program. Exchanges that are well-integrated with state Medicaid programs will ensure seamless enrollment. Further, because many individuals will move between Medicaid and the exchange over time due to fluctuation in income, it is crucial that exchange rules allow for coordination of plans, benefits, and physician networks to ensure continuous coverage. 4. Are the exchanges structured to emphasize administrative simplicity for consumers? A major goal of the Affordable Care Act is to make information about insurance easy to understand. Consumers must be able to obtain information such as premium rates and enrollment forms easily as well as details on plan benefits, provider networks, appeals processes, and consumer-satisfaction measures. This information should be available in multiple languages and literacy levels. 24

27 Insurance Market Definitions Health Benefit Exchanges Organized insurance marketplaces that, if designed and implemented well, should provide consumers with a one-stop shop to compare and purchase health insurance and enroll in public coverage programs, as well as use the power of a large-risk pool to generate competition among health plans based on quality and cost. Small Business Health Options Program (SHOP) Health benefit exchanges designed to help small employers provide health insurance options to their employees. Under the law, states must set up the SHOP exchanges to assist qualified small employers in enrolling their employees in private health insurance plans. States have the option of defining small employers as businesses with up to 100 employees. Starting in 2017, states may allow larger employers to participate in the SHOP exchanges. Individual Market An individual can purchase health insurance if he or she does not receive coverage from an employer. Individual market health plans are regulated by the state. Insurance Premium The cost of participating in a health insurance plan, not including any required deductibles or co-payments. Sometimes the individual bears the entire cost, and sometimes this cost is shared between the individual and the employer, or the individual and the government. Adverse Selection Adverse selection occurs when sicker consumers disproportionately enroll in a health insurance plan. Consequently, the premiums for such plans are higher than if the enrollees of the insurance plan were representative of the general population. Community Rating A method for setting health insurance premiums for covered individuals where the premium is the same for everyone within a specified geographic area. The premium is not adjusted for the individual's medical history or likelihood of using medical services. Some states use an adjusted community rating, which generally means that there is some adjustment in premiums for age. Rate Bands The amount by which health insurance premiums may vary according to certain characteristics. Under the Affordable Care Act, all plans (inside and outside the exchanges) can only use age (3:1), geography, and family size as reason for charging different people different rates.the state defines permissible geographical regions and family size units i.e., parent/single child, two parents with one or two children, etc. Navigators The Affordable Care Act establishes a navigator program within the exchanges to assist people with the array of insurance problems that might arise.this program is distinct from the patient navigator programs that the American Cancer Society and the Department of Health and Human Services run, which are more specifically directed at helping patients navigate medical and provider issues. Navigators may include community and consumer-focused nonprofit groups, chambers of commerce, unions, as well as insurance brokers. Risk Adjustments Methodologies have been developed to measure the relative health profiles of different insurance pools. Insurance pools that have a disproportionately high share of unhealthy enrollees receive more premium dollars than plans with relatively healthy enrollees. If implemented properly, the risk adjustments make covering high-risk patients more attractive to insurers and act as an incentive for them to develop efficient, high-quality provider networks to treat patients with serious medical conditions. 5. Does the exchange have a continuous and stable source of funding? To facilitate good management and planning, it is important that the exchanges have a predictable and steady source of funding. Otherwise, there is a risk that funding will become vulnerable to the often unpredictable legislative appropriations process. Fund- ing sources should be generated from plans inside and outside the exchanges, so carriers outside the exchanges are not afforded an unfair financial advantage that could lead to adverse selection. 6. Do the exchanges have the authority to be active purchasers? 25

28 Coverage To best promote high-quality care, innovative delivery system reforms, and for slowing the rate of growth of health care costs, exchanges should have the authority to be active purchasers when selecting participating health plans, as opposed to being required to allow every health plan that can meet the minimum requirements to participate. With this authority, exchanges could use their considerable market power and certification authority to limit exchange participation only to plans with a high level of quality and/or value when market conditions permit. ACS CAN and the Society are available to work with state policymakers to help implement the state health exchanges to ensure that cancer patients have available, affordable, adequate, and administratively simple health care coverage. Success Story With the passage of Assembly Bill 1602 and Senate Bill 900, California became the first state in the country to establish a health exchange under the Affordable Care Act. California s ability to act quickly was due in large part to momentum built from previous legislative campaigns to expand health insurance coverage in the state. In 2008, with the support of the Society s California Division and ACS CAN, the legislature attempted to pass a bill that would have made improvements to California s health insurance market similar to those that were later included in the Affordable Care Act. That effort failed, but it served as the catalyst for California consumer groups and legislators to think about the implementation requirements of coverage expansion at any level of government. When the Affordable Care Act passed, advocates were poised to consider issues such as who would be eligible to serve on the exchange board and how the exchange would negotiate with insurers in the state. Consequently, California was able to pass a strong health exchange law that prohibits those with a conflict of interest from serving on the governing board and gives the exchange strong negotiating authority. The support of groups like the Society and ACS CAN, which emphasized the value the exchange would have for patients, was critical to the success of the effort. Rating Provisions in State Exchange Proposals In future years, ACS CAN will be rating state exchanges on a redyellow-green scale based on the following criteria: Red State exchange law has troubling provisions. Examples: Allows insurance carriers and agents/brokers to serve on the board, with no recusal requirements and/or weak conflict of interest rules. Lack of any provision to address adverse selection. Prohibits anyone but brokers from serving as navigators. Yellow State exchange law has some concerning provisions. Examples: Lack of clear conflict of interest or open meeting laws in regards to the board operation. Gives the exchanges the authority to determine the criteria for qualified health plans, but does not explicitly allow negotiation on premiums, quality-improvement measures, etc. Gives the exchanges the authority to charge fees as their funding source, but is unclear over which entities the exchanges have this authority. Green State exchange law has strong provisions to ensure that the exchange will be attractive for consumers. Examples: Prohibits insurers that do not participate in the exchanges from only offering bronze-level or catastrophic plans. Fee to sustain the exchanges is charged on all carriers in the state. The board includes the Insurance Commissioner and Medicaid director. A strong conflict of interest law prohibits those who work, consult, or are board members of insurance carriers or broker agencies and their immediate family members from being appointed. 26

29 Coverage Medicaid and State Fiscal Pressures Medicaid Enrollment of Adults Living in Poverty, Washington Oregon Montana North Dakota Minnesota Vermont Maine California Nevada Idaho Utah Wyoming Colorado South Dakota Nebraska Kansas Wisconsin Iowa Illinois Missouri Indiana Michigan Kentucky Ohio West Virginia Pennsylvania Virginia New York New Jersey Delaware Maryland New Hampshire Massachusetts Rhode Island Connecticut District of Columbia Arizona New Mexico Oklahoma Arkansas Tennessee North Carolina South Carolina Mississippi Alabama Georgia Texas Louisiana Alaska Florida Hawaii How Do You Measure Up? 14-22% 27-32% 22-26% 33-57% Source: Urban Institute and Kaiser Commission on Medicaid and the Uninsured estimates based on the Census Bureau s March 2008 and 2009 Current Population Survey (CPS: Annual Social and Economic Supplements; Persons in poverty are defined as those in health insurance units with incomes less than 100% of the Federal Poverty Level (FPL). The Challenge Medicaid is a free or low-cost public health program for certain categories of low-income people, jointly financed and administered by the federal and state governments. Under the program s guidelines, the federal government matches dollars spent by each state and prohibits states from restricting coverage or establishing waiting lists for people to enroll. During economic downturns, Medicaid enrollment is higher as states face the dual fiscal pressures of decreased revenues and increased unemployment. For many low-income uninsured or underinsured people under the age of 65, Medicaid is the only source of regular cancer care. Yet, in an effort to balance their budgets, many state legislatures limit Medicaid eligibility, shrink enrollment periods, cover fewer benefits, and increase patients out-of-pocket expenses. During the past year, a number of lawmakers proposed changes to the way Medicaid is financed, from a federal match to a block grant arrangement or fixed payments distributed to states, which could seriously restrict access and coverage in the program. ACS CAN and the Society believe that block granting Medicaid is an ill-advised legislative proposal to save money in the Medicaid program. Cost savings under this proposal are very unlikely since the payments would be based on a state s estimated health care costs approved in advance. In addition, block grants do not automatically adjust to cover unanticipated health care costs or additional program needs as the 27

30 Coverage current federal financing structure does. Therefore, if health care costs exceed the amount of the Medicaid block grant, states would be left paying a greater portion of its Medicaid expenditures. As a result, states may simply stop providing health services for Medicaid beneficiaries until the following year s block grant becomes available, or they may impose cost-savings measures such as benefit reductions, enrollment freezes, waiting lists, and increased co-pays for patients. ACS CAN and the Society believe that every American deserves quality, affordable health care, and the Medicaid program plays a central role in providing low-income families and individuals with access to care. A sudden halt or restriction in eligibility can prevent people currently applying for Medicaid from gaining coverage for their cancer treatment. It can also interrupt the cancer care of present Medicaid patients which may create serious adverse effects on their chemotherapy or radiation treatments. Furthermore, waiting lists or increased co-pays can deter lower-income patients from seeking cancer care and delay timely access to screenings and treatment, often resulting in late-stage diagnosis and more severe or limited treatment options. State fiscal challenges also threaten access to care to the 16 million people who will become newly eligible for Medicaid under the Affordable Care Act which requires that states cover all persons under 133 percent of the federal poverty level beginning in The federal government will pay on average 96 percent of the expansion costs through 2019, and 90 percent of the costs beginning in 2020 for this newly eligible population. Because block granting Medicaid would allow states more flexibility to restrict eligibility, it is unclear whether the federal government would still require states to cover all persons under 133 percent of the FPL. Any reduction in federal funding for the Medicaid program will result in states spending substantially more dollars to cover this newly eligible population. Another concern is that some states believe repealing the Affordable Care Act's maintenance of effort provisions (MOE) can resolve budget problems. The MOE ensures that states maintain Medicaid eligibility levels that were in place at the time the Affordable Care Act was enacted until 2014 (and 2019 for children in the Children s Health Insurance Programs (CHIP). Without the MOE, current federal law allows states to restrict eligibility or enrollment for certain categories of low-income people. If states can certify to the federal government that they are in a budget crisis, they can reduce eligibility for non-disabled, non-pregnant adults with incomes above 133 percent of the Federal poverty line, which includes women diagnosed with breast and cervical cancer through the National Breast and Cervical Cancer Early Detection Program. An elimination of the MOE would make it extremely difficult for low-income or uninsured cancer patients to secure or maintain access to treatment. The Facts Medicaid and CHIP cover approximately 29 percent of children with cancer and 6 percent of adults with cancer. 1 Currently, Medicaid covers only 28 percent of adults living in poverty, while 45 percent of adults living in poverty are uninsured. 2 As of January 2011, only seven states provided Medicaid coverage or Medicaid-comparable coverage (enrollment was closed in one state) to low-income adults without dependent children. 3 The federal government provides matching funds covering 50 percent to 85 percent of costs. Thus, a $1-cut in state dollars can mean a loss of $1 to $3 in federal aid. 4 Cuts to Medicaid hurt state economies and the health workforce. Medicaid pays for 15 percent of all U.S. health care costs and nearly 18 percent of hospital costs. This means Medicaid is ultimately responsible for many low-wage workers salaries, such as nurses aides and home health aides. Loss of jobs may require further state assistance, including unemployment, welfare, and even Medicaid. 5 A recent analysis shows that if Medicaid had been turned into a block grant program in 2000, federal Medicaid funds would have been cut by 25 percent in most states and more than 40 percent in others between Out-of-pocket expenses for Medicaid beneficiaries rise twice as fast as their income. From , out-of-pocket medical expenses for Medicaid beneficiaries without dependent children rose by 9.4 percent a year on average. 7 28

31 The Solution Ensuring access to care for our nation s most vulnerable populations is essential to the fight against cancer. Reduced coverage and other changes to Medicaid and its financial structure would have major implications for program beneficiaries. ACS CAN and the Society encourage states to take full advantage of the flexibility the federal government already provides for state Medicaid programs. For instance: Improve Medicaid health systems. States are eligible for more money to help them develop simpler and more efficient information technology systems that modernize Medicaid enrollment. Design coordinated primary and specialty care programs. These programs are eligible for additional federal funding to improve quality and disease management for patients at risk for or with serious and expensive chronic conditions, such as cancer. Purchase drugs more efficiently. States can participate in the federal drug rebate program that provides full coverage for federally approved and medically prescribed cessation treatments. ACS CAN and the Society believe that these initiatives will help ensure that all Americans who qualify for Medicaid will have routine access to cancer prevention, early detection, and treatment services, allowing them to live longer and healthier lives. ACS CAN and the Society also encourage states to support the expansion of Medicaid in 2014 through the Affordable Care Act. The law makes critical improvements to the program and removes barriers that exclude uninsured Americans under 133 percent of the federal poverty level from enrolling in Medicaid. 29

32 Screening Colorectal Cancer Coverage The Challenge Colorectal cancer (otherwise known as colon cancer) is the third most frequently diagnosed cancer and the third most common cause of cancer death in the United States among men and women combined. 1 Colorectal cancer is one of the few cancers that can be prevented through screening and early detection. Of the estimated 49,380 people who will die of colon cancer this year, recommended testing could have saved 50 percent of them. 2 Colorectal cancer is easily preventable through screenings that detect and remove precancerous polyps. And when colorectal cancer is detected and treated early, survival is greatly enhanced. When diagnosed at an early stage, the five-year survival rate is 90 percent. However, when colorectal cancer is diagnosed after spreading to other organs, the five-year survival rate is only 12 percent. 3 Despite the lifesaving potential of colorectal cancer screening tests and the large costs associated with treating more advanced colorectal cancer, many Americans are not getting screened. Only 39 percent of colorectal cancer cases are diagnosed in the early stages of the disease. In the age 50 and older population, where colorectal cancer is most prevalent, only about half of adults in the United States are up to date with screening. 4 Screening Programs for the Uninsured Individuals without health insurance have lower rates of colorectal cancer screening than people with insurance. 5 As a result, the uninsured are more likely to be diagnosed with late-stage colorectal cancer and are less likely to be diagnosed at the earliest, localized stage, when the disease can be treated more effectively and less expensively. Despite the proven success of lifesaving screening programs that serve the uninsured and medically underserved, some states are drastically cutting them, putting the most vulnerable populations at higher risk of disease and death. In these tough economic times, programs that prevent income and insurance status from becoming barriers to cancer screenings are more critical than ever. Continued funding will save lives and save money. 30

33 Colorectal Cancer Screening Coverage Laws that require coverage for all recommended colorectal cancer screening options help save lives. Early cancer detection is the most fundamental factor in prognosis for colorectal cancer. However, lack of insurance coverage makes people less likely to be screened for cancers, such as colorectal and breast cancer, and puts them at significantly greater risk for late-stage diagnosis of disease and poorer prognosis. 6 Due to variability in access, patient choice, and physician options, it is very important to cover all recommended colorectal cancer screening options as acceptable choices. Colorectal cancer screening is already underutilized in the United States. Ensuring coverage for all screening tests is an integral part of access to early detection and prevention. Research shows that the full range of colorectal cancer screenings can be covered at little or no additional cost to insurers, employers, or employees, when compared to the cost of treatment. These screenings are unique in that they can prevent a person from getting colorectal cancer, thus preventing needless death and suffering, while reducing the amount of money spent on treatment. Provisions in the Affordable Care Act only require coverage for a select group of tests, but there are additional American Benchmarking Insurance Coverage for Colorectal Cancer Screening Washington Montana North Dakota Vermont Maine Oregon Minnesota Idaho Wyoming South Dakota Wisconsin Michigan New York* New Hampshire Massachusetts Rhode Island California Nevada Arizona Utah Colorado New Mexico Nebraska Kansas Oklahoma Iowa Missouri Arkansas Illinois Indiana Kentucky Tennessee Ohio West Virginia Pennsylvania** North Carolina South Carolina Virginia Connecticut New Jersey Delaware Maryland District of Columbia Mississippi Alabama Georgia Texas Louisiana Alaska Florida Hawaii Strong Screening law that ensures comprehensive coverage for the full range of tests Screening law requires insurers to cover some tests or Statewide agreements with some insurers to cover the full range of tests How Do You Measure Up? No state requirements for coverage or screening law requires insurers to offer coverage but is limiting because it does not guarantee coverage Sources: Health Policy Tracking Service & Individual state bill tracking services *The New York Health Plan Association, which serves 6 million New Yorkers, covers the full range of colorectal cancer screening tests, as a part of a voluntary collaborative with the Society. **Pennsylvania passed its law in 2008 but restricted the mandate to employers with more than 50 employees. 31

34 Screening Cancer Society-recommended screening options that should be readily available to all patients. ACS CAN and the Society advocate for states to enact patient protection laws that expand colorectal screening coverage to include all evidencebased tests and to cover individuals who are at high risk. The Facts This year, an estimated 141,210 people will be diagnosed with colorectal cancer in the United States and about 49,380 will die from the disease. 7 The rate of colorectal cancer screening is much lower among racial minorities and the medically underserved. 8 Less than 20 percent of those without health coverage in the United States have been screened for colorectal cancer, compared to more than 55 percent among those with insurance coverage. 9 The Solution Provisions in the Affordable Care Act provide coverage for all preventive services that have been given a rating of A or B by the U.S. Preventive Services Task Force (USPSTF). Because of the new law, these services, which include colonoscopy, sigmoidoscopy, and fecal occult blood tests, are currently available under all new health plans and Medicare at no cost to patients. Plans partic 32

35 ipating in state health insurance exchanges will also cover such services starting in Even with these advances, there is still much work to be done to ensure that all patients have the full spectrum of screening services available. In the coming year, it is critical that states continue to enact laws that expand access to colorectal cancer screening to further help reduce the number of deaths from this disease. ACS CAN and the Society urge state policymakers to ensure that all insurance policies offer coverage for colorectal cancer screenings at no cost to the patient, including those not mandated to do so under the Affordable Care Act. ACS CAN and the Society also advocate for programs and services that provide access to colorectal cancer screening for uninsured, underinsured, and low-income populations, including treatment and follow-up care for detected cancers. Success Story On December 1, 2010, a bill requiring all state-regulated insurance plans in Wisconsin to cover the cost of the full range of colon cancer screening tests became law. The new law was the culmination of a more than two-year effort by ACS CAN and Society volunteers and staff, and included a hard-fought victory that guarantees coverage of colon cancer screenings, in accordance with Society guidelines, for high-risk patients under age 50. Thanks to this important new law, more Wisconsin residents will have access to lifesaving colorectal cancer screening tests and more lives will be saved. The American Cancer Society recommends that average-risk adults age 50 and older begin screening for colorectal cancer using the following methods and frequencies: Tests that find polyps and cancer Flexible sigmoidoscopy every five years, or Colonoscopy every 10 years, or Double-contrast barium enema (DCBE) every five years, or CT colonography (CTC) every five years Tests that mainly find cancer Annual fecal occult blood test (FOBT) with at least 50 percent test sensitivity for cancer, or Annual fecal immunochemical test (FIT) with at least 50 percent test sensitivity for cancer, or Stool DNA test (sdna), with high sensitivity for cancer, interval uncertain During public hearings, lawmakers heard testimony from an ACS CAN and Society volunteer who described his stage IV colon cancer diagnosis two years after his insurer denied his initial physician-recommended colonoscopy. Additionally, testimony was heard from parents of high-risk children who would have been unable to get the recommended screenings without the new law. The legislation, championed by Sen. Robert Wirch and Rep. Pedro Colón, passed the state Senate unanimously and the Assembly by a vote. Following the vote, and despite heavy insurance industry lobbying efforts, ACS CAN and Society staff worked directly with Wisconsin s insurance commissioner to develop strong administrative rules to guide the new insurance requirements, such as requiring insurance coverage for high-risk populations. 33

36 Screening Funding for Breast and Cervical Cancer State Appropriations for Breast and Cervical Cancer Screening Programs Washington Oregon Montana North Dakota Minnesota Vermont Maine California Nevada Idaho Utah Wyoming Colorado South Dakota Nebraska Kansas Wisconsin Iowa Illinois Missouri Indiana Michigan Kentucky Ohio West Virginia Pennsylvania Virginia New York New Jersey Delaware Maryland New Hampshire Massachusetts Rhode Island Connecticut District of Columbia Arizona New Mexico Oklahoma Arkansas Tennessee North Carolina South Carolina Mississippi Alabama Georgia Texas Louisiana Alaska Florida Hawaii State Allocations for the programs are > 100.0% of the CDC award State Allocations for the programs are between % of the CDC award How Do You Measure Up? State Allocates no money for the program Source: data from the Centers for Disease Control and Prevention and unpublished data collected from ACS CAN and ACS Divisions, including input from NBCCEDP directors. The Challenge Research shows that early detection of breast and cervical cancer saves lives. That is why the American Cancer Society recommends that women age 40 and over have yearly mammograms and that all adult women get regular Pap tests. With the economic downturn straining family finances and prompting some Americans to forgo preventive care and visits to the doctor, the need to protect women s access to preventive health services, and to provide access to breast and cervical cancer screenings, is greater than ever. More women are now uninsured and cutting back on routine cancer screenings and examinations designed to protect their health. A recent ACS CAN survey found that one in seven people with a history of cancer who earn less than $30,000 annually reported needing to delay preventive testing or treatment for cancer at some point due to cost. The Facts Breast Cancer Excluding skin cancer, breast cancer is the most frequently diagnosed cancer among U.S. women an estimated 230,480 new cases of invasive breast cancer and 57,650 new cases of non-invasive breast cancer will occur this year. 1 An estimated 390,970 women will die from the disease, making it the secondleading cause of cancer death among women in the United States. 2 34

37 A mammogram is the most accurate and cost-effective tool available to find breast cancer before symptoms appear. However, mammogram rates continue to be particularly low among many minority groups, and those who lack health insurance. 3 Consequently, women in these groups are more likely to have their breast cancers detected at an advanced stage, when treatment is less likely to be effective. When breast cancer is diagnosed at the localized stage, the five-year survival rate is 98 percent; however, when it is diagnosed after spreading to distant organs, the five-year survival rate decreases drastically to 23 percent. 4 The Facts Cervical Cancer An estimated 12,710 new cases of cervical cancer will be diagnosed among women in the United States this year, and 4,290 women will die from the disease. 5 Pap tests detect precancerous lesions that can be treated before they become cervical cancer, resulting in a nearly 100 percent survival rate. 6 When detected at an early stage, cervical cancer has a five-year survival rate of 91 percent. However, when cervical cancer is diagnosed at an advanced stage, survival rates plummet to 17 percent. 7 The Changing Health Care Environment: Cancer Screening and the Uninsured In partnership with state-administered breast and cervical cancer screening programs, the CDC s National Breast and Cervical Cancer Early Detection Program (NBCCEDP) provides low-income, uninsured, and underinsured women with access to lifesaving breast and cervical cancer screenings and follow-up care. Increased state and federal funding will ensure that this program has adequate resources to reach and serve more eligible women. Increased state and federal funding for NBC CEDP will save lives. The NBCCEDP awards annual grants to states with breast and cervical cancer early detection programs that provide in-kind or monetary matching funds at least $1 for every $3 in federal money. However, a shortage of state and federal funding currently allows for fewer than 20 percent of eligible women nationwide to receive these lifesaving cancer screenings. Consequently, millions of eligible women are going without these critical early detection services. Last year, the NBCCEDP celebrated 20 years since its launch with the goal of providing breast and cervical cancer screenings to underserved women. To date, the program has provided more than 9.2 million screening exams to more than 3.7 million underserved women. 8 As a result of the Breast and Cervical Cancer Prevention and Treatment Act of 2000, all 50 states and the District of Columbia provide a Medicaid option that treats women diagnosed with cancer under the NBCCEDP. When the Affordable Care Act is fully implemented in 2014, provisions in the law will provide many women with increased access to essential breast and cervical cancer screening services, but even in 2014 and beyond there will continue to be a large number of underserved women who will not have access to these lifesaving screenings. States must recognize that underserved women will continue to need access to preventive screenings that detect cancer at its earliest, most treatable stages. 35

38 Screening The Changing Health Care Environment: Private Insurance Coverage and Breast Cancer Screening Early breast cancer detection is the single most important factor in achieving a good health outcome. However, lack of adequate insurance coverage makes people less likely to be screened for cancer and puts them at significantly greater risk for late-stage diagnosis of disease and poorer prognosis. 9 Research shows that mammograms can be covered for little or no additional cost to insurers, employers or employees, when compared to the cost of treatment. 10 Laws that require coverage for all recommended breast cancer screening options help save lives. States that require private insurers to cover annual mammograms for women age 40 and older have comprehensive breast cancer screening policies. The evidence shows that legislation is not adequate if it only requires private insurers to cover annual mammograms for women age 50 and older, or if required by a physician. 11 Per American Cancer Society recommendations, ACS CAN and the Society urge policymakers to maintain laws that protect access to breast cancer screenings for all women age 40 and over. The Solution State policymakers must ensure that neither income nor insurance status is a barrier to cancer screenings. State policies supporting education and screening along with well-funded programs are critical to ensuring that all eligible women receive these lifesaving services. In 2007, the NBCCEDP was reauthorized, allowing for greater flexibility in the program to enable it to reach more uninsured and other medically underserved women. The reauthorization also set increased funding targets for the program from the previous $202 million a year to $275 million a year over the course of five years. This year, ACS CAN and the Society are advocating for Congress to increase annual funding for this program from the current $215 million to the full $275 million authorized. Providing sustained funding increases for the NBCCEDP will mean that it can provide high-quality screening services to more low-income, uninsured, and underinsured women. Legislative Call-to-Action ACS CAN and the Society strongly urge states to follow the science when developing new screening and coverage legislation. Throughout the past year, breast cancer bills have been introduced around specific issues that have not yet been scientifically proven to be effective. Some of these bills mandate specific insurance coverage and others dictate how physicians practice. While these efforts may be well-intended, implementing these types of mandates would likely result in overuse of tests that have not been shown to be effective and lead to increased anxiety among those undergoing them.acs CAN and the Society recommend that state mandates be consistent with American Cancer Society screening guidelines. Additional funds are needed, however, which makes state legislative action critical. Several states have appropriated funds above the required match to expand their screening program capacities and thus serve more eligible women. Recognizing their fiscal constraints, a few states have leveraged funding from other public and private sources to expand the program s reach. Unfortunately, many states are slashing funding to the NBCCEDP. Decreased funding means that fewer eligible women across the United States have access to lifesaving screenings. In order to reach as many eligible women as possible, ACS CAN and the Society urge state legislators to continue appropriating dollars for this underfunded program and, when faced with budgetary shortfalls, to continue identifying alternative funding sources. ACS CAN and the Society also urge state legislators to maintain laws that protect access to breast cancer screenings and to expand coverage for all eligible women. It is critical that patient protection laws specify that coverage for annual mammograms be guaranteed for all women age 40 and older. Currently, provisions in the Affordable Care Act require that all new plans and Medicare now cover mammograms for women age 40 and older. However, there are still many private insurance plans that do not ensure this coverage. Grandfathered 36

39 plans plans that existed at the time the law was enacted are not required to cover these services, and plans participating in state health insurance exchanges will not be required to cover this group until State legislative action is required in many states to ensure this coverage for all women. Success Story With an influx of new state legislators, a new governor and a budget deficit of more than $1.5 billion, it was clear that protection of vital Tennessee programs, like the BCCEDP, would be difficult. Leading up to and throughout the legislative session, Society staff and volunteers in Tennessee led efforts to protect funding by educating legislators about the program and sharing personal stories during several successful lobby days. Additionally, the Society used action alerts to mobilize grassroots volunteers to urge the governor to restore the one-time BCCEDP funding that would end in FY As a result of these efforts, the BCCEDP received $1 million in total funding, which more than doubled the amount that would have been allotted to the program if the one-time funds from FY 2011 had been allowed to expire. These efforts will save lives by ensuring that Tennessee women have access to lifesaving breast and cervical cancer screenings. Program Cuts Putting Women at Risk Lack of adequate funding for NBCCEDP is affecting low-income women in more than two-thirds of states. Have Reduced State Implemented Waiting Routine Mammo- Funding or Provide Lists or Other Means gram for Women State No Funding of Limiting Access Not Covered Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware District of Columbia Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina * South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin ** Wyoming * Screens only women over 47 ** Screens only women over 45 Note: Funding amounts are those that are lower in fiscal year 2011 than in fiscal year

40 of Life The Lifeline to Quality of Life & Survivorship Access to Palliative Care in the Nation s Hospitals Washington Oregon Montana North Dakota Minnesota Vermont Maine California Nevada Idaho Utah Wyoming Colorado South Dakota Nebraska Kansas Wisconsin Iowa Illinois Missouri Indiana Michigan Kentucky Ohio West Virginia Pennsylvania Virginia New York New Jersey Delaware Maryland New Hampshire Massachusetts Rhode Island Connecticut District of Columbia Arizona New Mexico Oklahoma Arkansas Tennessee North Carolina South Carolina Mississippi Alabama Georgia Texas Louisiana Alaska Florida Hawaii Pallative care program in % of the state s hospitals Pallative care program in 41-60% of the state s hospitals How Do You Measure Up? Pallative care program in 0-40% of the state s hospitals Source: America s Care of Serious Illness: A State by State Report Card on Access to Palliative Care in Our Nation s Hospitals (2008). Report produced by the Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC). The Challenge Promoting quality of life and preventing suffering for all patients are essential aspects of delivering high-quality, patient-centered care. When facing a serious illness such as cancer, most patients want to be cured whenever possible and provided comfort always. But studies examining the experience of being hospitalized with a serious illness in the United States have shown that our current patient care system is falling short. Although the reasons for inadequate care of the seriously ill are many, most stem from a medical culture that is focused on curing individual diseases and a health system that is designed to reimburse disease-specific care. Looking at the complexity of cancer treatment and the medical system today, quality of life has been pushed to the back burner at a time when patients and families are more concerned about it than ever. In a poll ACS CAN conducted last year of 1,000 people with a history of cancer or someone with cancer living in their household, fewer than one-third reported that their quality-of-life concerns and goals were identified or considered when cancer treatment decisions were being made. The Facts One in four patients reports inadequate treatment of pain and shortness of breath. 1 38

41 One in three families reports inadequate emotional support. 2 One in three patients reports that they receive no education about how to treat their pain and other symptoms following a hospital stay. 3 One in three patients is not provided with arrangements for follow-up care after hospital discharge. 4 The Solution Palliative care is specialized medical care that is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness whatever the diagnosis with the goal of improving quality of life for both patients and their families. Some hospitals have already begun to establish palliative care teams consisting of doctors, nurses, and other specialists to work with a patient s other doctors to provide an extra layer of support for the most seriously ill and vulnerable patients. Palliative care is appropriate at any age and at any stage of a serious illness, and can be provided together with curative treatment. Over the past decade, evidence has consistently demonstrated the benefits of palliative care in alleviating pain, symptoms, and emotional distress, as well as the burden on family members and caregivers. More recent evidence shows that palliative care may enhance survival 5 and reduce costs 6, 7 attributable to the unnecessary use of hospitals, diagnostic and treatment interventions, and non-beneficial intensive care. In the past five years alone, the number of palliative care teams in hospitals has more than doubled in response to the increasing numbers and needs of Americans living with serious, complex, and chronic illnesses like cancer, as well as the realities families face in caring for them. While the use of palliative care teams in hospitals is growing overall in the United States, the accessibility of such teams varies considerably from state to state. Moreover, the palliative care team model is strikingly scarce in public and sole community-provider hospitals, which often serve as the only option for medical care among our nation s uninsured and geographically isolated areas contributing to growing health disparities in these populations. In response to these challenges, ACS CAN and the Society urge legislators to work toward policies that help increase the availability of palliative care services and pain medications for those with serious illnesses such as cancer, especially at the local level and for those in underserved communities. 39