The Ryan White HIV/AIDS Program What s Next?

Transcription

1 The Ryan White HIV/AIDS Program What s Next? Tara Britton, M.P.A., Public Policy Associate With assistance from Melissa Federman, M.P.H., Treuhaft Chair for Health Planning; Director, AIDS Funding Collaborative State Budgeting Matters Volume 10, Number 5 October, 2014

2 The Ryan White HIV/AIDS Program What s Next? By Tara Britton, Public Policy Associate October, 2014 Highlights: The Ryan White HIV/AIDS program provides treatment and support services to lowincome people living with HIV/AIDS (PLWHA) free of charge for those who have no other source of health insurance. The Ryan White Program functions as separate Parts that fund services for cities, the states, and to individual treatment providers to provide HIV care. About 1,000 Ohioans are diagnosed with HIV each year. Despite public health advances, this figure has remained consistent. Overall, there are almost 20,000 known PLWHA in Ohio. As the Affordable Care Act (ACA) is implemented, PLWHA who rely on Ryan White as their primary payer for services will shift to other forms of health insurance coverage, either through expanded Medicaid or private health plans offered in the insurance Marketplace. These forms of insurance will provide comprehensive care, since Ryan White is limited to covering HIV related care. Ryan White will continue to provide valuable services for PLWHA. This shift is a significant change for PLWHA and will take time. Ryan White case managers play a vital role in helping clients enroll in new forms of insurance through the ACA, as well as maintaining their connection with Ryan White funded HIV support services, many of which are not covered by these new forms of insurance. Supportive services, such as transportation, housing, food assistance, nutrition services, peer support, legal services, and medication adherence counseling, among others, are essential for PLWHA in managing a complex condition like HIV. These support, or wrap around, services are covered by Ryan White (in addition to treatment services), and help PLWHA get into and stay connected to care to help them live healthier, longer lives and reduce the likelihood of transmitting the disease to others. Page 1

3 Introduction The Ryan White HIV/AIDS Program provides HIV related medical care, prescription drugs and care management to low income individuals living with HIV/AIDS. The Ryan White program has evolved since it was established in While it originally focused on the cities hardest hit by the AIDS epidemic, the program has become more comprehensive over the years and is now made up of several Parts that provide treatment and a range of services that help people living with HIV/AIDS (PLWHA) manage their disease. During the height of the AIDS epidemic in the 1980s and early 1990s, people who were diagnosed with HIV or who were at high risk of becoming infected had very few options for support when it came to obtaining care or early intervention services (i.e., HIV counseling, testing, and referral activities). Unless a person had insurance through his or her job, was over age 65 and on Medicare, or was disabled due to AIDS or another condition and received Medicaid, the only option for care was to go to emergency rooms or free clinics. Given the public health impact of the epidemic, advocates and lawmakers acted to secure a means of treatment for HIV. Since 1990, the Ryan White Program has allowed individuals without another source of health coverage to receive care for their HIV free of charge. The services provided through the program are described in this paper. The Ryan White program is experiencing another evolution as federal health care reform has begun to expand coverage and access to care for uninsured individuals at an astounding rate. Uninsured people living with HIV/AIDS who have relied on the Ryan White program to provide for their HIV care and services will move into other forms of health insurance that provide broader care for all of their health care needs. Ryan White will maintain payer of lastresort status, meaning it will fill gaps in HIV care only when other forms of payment are not available. Given this status, Ryan White can continue to play an important role in providing cost sharing assistance for people who cannot fully afford their new health insurance and supportive services that complete the continuum of care that is required to manage a complex health condition like HIV. Impact of HIV/AIDS in Ohio Each year in Ohio, about 1,000 people are diagnosed with HIV. In 2013, 1,180 people were diagnosed. Overall, there are almost 20,000 known PLWHA in Ohio (Figure 1) and over 1.1 million PLWHA in the United States. 1 Despite public health interventions and advancing treatment for HIV/AIDS, the number of new people diagnosed each year has not declined. Page 2

4 Figure 1. Total Number of People Living With HIV/AIDS in Ohio from 2002 to 2013* 20,000 18,000 16,000 14,000 12,000 10,000 8,000 6,000 4,000 2, Source: Ohio Department of Health, Ohio HIV/AIDS Surveillance Data *Represents all persons ever diagnosed and reported with an HIV infection since the beginning of the epidemic living in Ohio who have not been reported as having died Overview of the Ryan White HIV/AIDS Program The Ryan White HIV/AIDS Program was established through the federal Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 as a payer of last resort for HIV/AIDS patients seeking care, medication, and support services for their disease. The program covers outpatient but not inpatient treatment costs, medical case management, and co payments and insurance premiums for uninsured or underinsured low income individuals. The federal authorizing legislation has been amended and reauthorized four times since The Ryan White program is administered by the Health Resources and Services Administration (HRSA) within the U.S. Department of Health and Human Services. Funds for this program are distributed to cities, states, treatment providers, and community based organizations. Distribution is based on formulas accounting for the number of HIV cases in a region. The program provides grants to Ohio primarily in four categories, as shown in Table 1. Parts A and B comprise the vast majority of spending. All Parts of the program are described in Table 1, except for Parts E and F. Part E was established for emergency response and providing HIV care in a disaster situation, but funds were never appropriated. 2 Part F funds AIDS Education and Training Centers (AETC) i, Special Projects of National Significance (SPNS) ii, the Dental Reimbursement Program iii and part of the Minority AIDS Initiative. i AETCs train health professionals in HIV treatment and prevention. The Pennsylvania/MidAtlantic AIDS Education and Training Center in Pennsylvania serves six states, including Ohio, and Washington D.C. There are partner training sites in Ohio at the Ohio State University and the University of Cincinnati. The funds for AETC flow through the main site in Pennsylvania. ii MetroHealth in Cleveland received a SPNS grant in 2014 for $299,064. iii Case Western Reserve University in Cleveland receives small grants through the Dental Reimbursement Program. Page 3

5 Table 1. Ryan White Program Parts Part A Transitional Grant Area (TGA) Part B Base and AIDS Drug Assistance Program Earmark and Minority AIDS Initiative and Emerging Communities Part C Early Intervention Services, Planning and Capacity Development Grants Part D Services for Women, Infants, Youth and Families Six counties in rtheast Ohio (Cleveland Part A) and eight counties in Central Ohio (Columbus Part A) (see Table 2) Statewide program administered by the Ohio Department of Health Grants awarded directly to service providers for early intervention and ambulatory care (see Table 3) Grants awarded directly to service providers for primary outpatient and ambulatory care The first established Part A region in Ohio was the Cleveland Regional TGA, covering Ashtabula, Cuyahoga, Geauga, Lake, Lorain, and Medina counties. The Cuyahoga County Board of Health is the grantee that administers Part A funds in the Cleveland Regional TGA with the guidance of a Ryan White Part A Planning Council. The Columbus region became eligible for a Ryan White Part A grant in 2013 based on the reported new AIDS cases during the most recent five years. Franklin County has experienced more new cases of HIV over the last few years than any other area in the state. The Columbus TGA includes Delaware, Fairfield, Franklin, Licking, Madison, Morrow, Pickaway, and Union counties. The Columbus Public Health Department is the grantee that administers the funds for the Central Ohio region with the guidance of a planning council. Table 2. Part A Funding in Ohio: FYs 2013 and 2014 FY 2013 FY 2014 Cleveland Transitional Grant Area $3,627,267 $4,391,932 Columbus Transitional Grant Area $4,010,911 $4,368,412 Total Part A Funding in State $7,638,178 $8,760,344 Source: HRSA Data Warehouse, Retrieved July 9, 2014 Part C of the Ryan White program makes grants directly to treatment providers for services. These grants are generally designated to ambulatory medical clinics to provide early intervention services and ambulatory care. Part C also provides planning grants to more effectively provide and deliver care for HIV/AIDS. An additional component of Part C is a capacity development fund that helps grantees to develop, strengthen, and expand access to quality care for people in underserved or rural communities and communities of color with or at risk of getting HIV/AIDS. Ohio providers received a total of $300,000 in 2014 from the capacity development component of Ryan White Part C. 3 Page 4

6 Table 3. Part C (Outpatient Early Intervention Services) Grants in Ohio: FYs 2013 and 2014 FY 2013 FY 2014 AIDS Resource Center Ohio $456,091 $504,005 Care Alliance $192,969 $231,563 Cincinnati Health Network $839,753 $839,753 City of Portsmouth $249,219 $211,219 Research Institute at Nationwide Children s Hospital $395,833 $323,111 University Hospitals of Cleveland $504,830 $466,830 University of Toledo $460,326 $422,326 Ursuline Center $316,469 $278,469 Source: HRSA Data Warehouse, Retrieved July 9, 2014 Part D of the Ryan White program also makes grants directly to service providers, but the services must be directed for women, infants, children, and youth with HIV/AIDS. In Ohio, two of the Part C grantees (University Hospitals of Cleveland and University of Toledo) are also Part D grantees. In his most recent federal budget proposal, President Obama has proposed merging these two parts of the Ryan White program. The proposed budget justifies this merger by stating that the Part C program will emphasize care across all vulnerable populations, including those served previously by Part D. This merger will also allow resources to be more targeted at the most appropriate points along the continuum of care. 4 State Program: Ryan White Part B The largest portion of the Ryan White program, the Part B program, provides grants to states that include a base grant for care and support services, the AIDS Drug Assistance Program (ADAP) award specifically for medications, ADAP supplemental grants iv, grants to states for Emerging Communities, and a Minority AIDS Initiative Award. The amount provided to a state is based on the number of people living with HIV and AIDS in the state. For the base grant and ADAP, Ohio must match every $2 of federal funds with $1 of non federal matching funds, either in the form of dollars or in kind resources. The maintenance of effort (MOE) requires that the state contribute at least the same amount of state funds for HIV/AIDS related activities as in the previous fiscal year. The Part B federal formula is weighted to reflect the presence of the Cleveland and Columbus TGAs, but it is important to note that the ADAP program is available to anyone who qualifies statewide. Pharmaceutical rebates on medications that are purchased by the Part B program also provide an important source of revenue for the program. The Ohio Department of Health (ODH) administers the Part B program for Ohio and contracts directly with providers and case management agencies in order to deliver care to Ryan White clients. Case management occurs through 14 grantee organizations 5, and includes medical and nonmedical case management as well as referrals to relevant providers. The importance of this role will be described in the next section. iv Ohio is not currently eligible for ADAP supplemental funds. Page 5

7 Table 4. Ryan White Part B (Includes OHDAP) Funding Sources Federal Funding (RW program Year) $25,380,292 $23,037,985 $23,163,699 State GRF Funding* (state fiscal year) $4,232,983 $6,682,111 $5,931,168 Source: HRSA Data Warehouse and Ohio Legislative Service Commission, Budget in Detail *This does not reflect the total amount of state dollars spent on HIV/AIDS related efforts. Spending, not included in this table, from other state programs is counted toward the state s matching requirement. Additionally, the GRF funding amount listed here is only partially directed toward Ryan White program spending. The other portion of this funding is directed to the HIV prevention program. The ADAP is the core component of the Part B program, called the Ohio HIV Drug Assistance Program (OHDAP) in Ohio. Federal funds are specifically designated for ADAPs. ADAPs provide medication for the treatment of HIV/AIDS and related conditions to qualifying individuals. In Ohio, the eligibility requirements are a diagnosis of HIV/AIDS, income at or below 300 percent of the Federal Poverty Level, and residence within the state. ADAP funds can also be used for wrap around services for those with insurance (i.e., premiums and cost sharing requirements) or with Medicare and Medicaid. The mix of services that the OHDAP funds is expected to shift as clients move into other forms of health insurance coverage as the Affordable Care Act continues to roll out. The base grant portion of Part B covers HIV related medical visits, dental services, mental health services, and other types of treatment. It also covers supportive services that help clients manage their disease. Case management agencies around Ohio that receive grants from ODH through the Part B program provide both medical and non medical case management to Ryan White clients to provide integrated treatment and support services. These support services are not expected to be fully covered by expanded health care through the ACA, and Ryan White will be necessary to continue to fill the role of covering these services. The role of case management and supportive services is expanded upon later in this paper. Page 6

8 Table 5. Ryan White Program Part B Major Categories of Spending Service RW Year* 22 (April 2012 March 2013) RW Year* 23 (April 2013 March 2014) RW Year* 24 (April 2014 March 2015) BUDGETED Salary/Fringe/Indirect for ODH Program Staff $2,534,164 $3,159,945 $3,371,610 Travel $9,268 $10,133 $46,349 Equipment $10,880 $15,410 $73,726 Supplies $7,418 $28,901 $20,400 Mental Health/Substance Abuse $20,376 $36,658 $100,000 Diagnostics and Monitoring $1,834,879 $1,624,993 $1,784,209 Medical Services $616,287 $513,008 $1,000,000 Oral Health Care $1,254,641 $1,300,998 $2,000,000 Insurance Continuation Premiums $2,113,914 $2,538,330 $2,500,000 Insurance Continuation Spenddown $526,973 $526,706 $650,000 Emergency Medications and Testing $108,517 $149,783 $200,000 Prescription Drug Purchases $12,679,854 $19,285,252 $16,986,689 Prescription Drug Distribution $3,570,689 $4,204,056 $4,211,462 Medical Case Management $4,282,443 $4,320,518 $6,315,299 Client Outreach and Education $258,257 $301,461 $390,502 Total $29,828,560 $38,016,152 $39,650,246 Source: Ohio Department of Health, HIV Care Services *Ryan White Program Year runs from April to March Since a requirement of the Ryan White program is that it be the payer of last resort for the services it covers, expanded coverage under health care reform has brought a lot of changes to the program and its clients. The next section examines the myriad benefits that the Affordable Care Act (ACA) offers to PLWHA as well as anticipated changes for the Ryan White program. Overview of the Affordable Care Act for PLWHA The federal Affordable Care Act (ACA), also referred to broadly as health care reform, was signed into law in 2010 with the goal of greatly expanding access to both private and public health insurance for Americans. There are two primary ways access to insurance will be expanded. Medicaid was expanded to cover everyone under the age of 65 with a household income less than or equal to 138 percent of the Federal Poverty Level (FPL) v. In a subsequent v 138 percent of FPL is equal to about $27,300 annually for a family of three or $16,100 for a family of one. Page 7

9 Supreme Court ruling challenging the constitutionality of the ACA, the expansion of Medicaid was made optional for states. Twenty seven states, including Ohio, and Washington D.C. have moved forward with a Medicaid expansion. Ryan White will continue to serve as the primary form of health insurance for low income uninsured PLWHA for their HIV care in states that have not expanded Medicaid. 6 For uninsured individuals above 138 percent FPL, the insurance exchange or Marketplace (healthcare.gov) created by the ACA offers private insurance plans available for purchase. To make this coverage more affordable, tax credits are available through the Marketplace to those with incomes between 100 percent and 400 percent FPL. The ACA prohibits insurers from denying coverage or charging more for a policy due to a preexisting medical condition. This is particularly important to PLWHA, who have historically been denied insurance coverage or paid very high premiums, or for whom services and medications related to HIV were either not covered or required more cost sharing than other services. w that PLWHA have increased access to insurance, Ryan White will continue to play an important role in completing their coverage to manage a complex condition like HIV. In addition to prohibiting discrimination based on pre existing conditions, insurers are prevented from dropping beneficiaries coverage if they become ill. The ACA also disallows lifetime and annual limits on health insurance benefits. Previously, insurance plans could cap benefits in a year and/or lifetime at a set dollar limit. Especially important to the younger segment of the population is the ACA provision that allows youth up to age 26 to remain on their parents insurance plan even if they have a job with coverage, live out of state, or are married. Another important reform for PLWHA is protection from discrimination based upon race, color, national origin, disability, age, sex, sexual orientation, or gender identity. Most major provisions of the ACA were in effect on or before January 1, It is too soon to tell the full impact of the law on PLWHA, but the rate of people moving from Ryan White to other forms of coverage increased through the first half of Early estimates indicate that, nationwide, 12,000 ADAP clients moved to Medicaid and 13,000 moved to health insurance plans through the Marketplace. 7 At the state level, estimates through August 8, 2014, reflect the national trend. ODH can confirm that 198 clients are now covered through the expansion of Medicaid and 226 clients have enrolled in an ACA Marketplace plan. The number of clients who rely entirely on Ryan White Part B for their HIV health care needs, known as formulary or full pay clients, decreased in Ohio from 2,604 to 1,542 from September, 2013, to August, This decline is not entirely attributable to the ACA, but it is certainly a factor. 8 For the clients who moved to Marketplace plans, ADAPs are providing premium and costsharing assistance, because even with federal subsidies, these plans can be expensive. Ryan White will also continue to provide case management and other services not covered by public or private insurance plans that play an important role in the continuum of care for PLWHA. Page 8

10 Essential Health Benefits The ACA requires that every plan offered in the Marketplace provide a minimum set of services, known as the Essential Health Benefits. There are 10 essential health benefits that must be offered (Table 6). Table 6. Ten Essential Health Benefits under the Affordable Care Act Ambulatory patient services (outpatient services) Emergency services Hospitalization Maternity and newborn services Mental health and substance use disorder services Prescription drugs Rehabilitative and habilitative services and devices Lab services Preventive and wellness services and chronic disease management Pediatric services, including vision and dental Source: Essential Health Benefits, healthcare.gov. Accessed July 14, All services classified as preventive under the ACA are provided at no charge to the person receiving the services. This set of services includes HIV testing for all adults at higher risk, as well as adolescents at higher risk for HIV. A wide array of additional preventive services are covered for women, including contraception and counseling for domestic violence and sexually transmitted infections. Together, these provisions will allow more people to get tested more often, with the intended effect of more people knowing their HIV status and getting treatment sooner in the course of the disease. Removing the barrier of cost of the HIV test, as well as helping to reduce stigma, are important reforms resulting from the ACA. Impact of Affordable Care Act The ACA is a major reform to the health care system. It will take time for people to transition to other forms of insurance. As described above, nationwide, people are moving into Medicaid or plans through the insurance Marketplace. Medicaid enrollment is open throughout the year, but enrollment in plans offered in the Marketplace have a limited open enrollment period for a few months each year. Special enrollment periods are allowed for life changing events such as marriage, divorce, birth of a child, or a change in employment status. The first period of open enrollment ran from October, 2013, to March, 2014, but the Marketplace was not fully functional for that entire period. The next open enrollment period, beginning in vember, 2014, and running through February, 2015, offers a chance to enroll even more uninsured PLWHA who will gain access to comprehensive health care coverage. This is vital for clients with cooccurring health conditions since Ryan White provides for care only related to HIV and does not provide any coverage for inpatient treatment. It is important to remember that Ryan White will maintain its payer of last resort status, so clients are required to move to other available forms of health insurance. Page 9

11 Coverage through the ACA and Ryan White Need to Work Together within the Framework of the Care Continuum Of all individuals who are HIV positive living in the United States, estimates show that between 15 and 20 percent do not know their HIV status. To add to this worrisome statistic, not all individuals who do know their status are engaged in medical care for their HIV, including taking antiretroviral medication. The HIV Care Continuum (Figure 2) represents the individuals, out of all PLWHA, who are engaged at each point of HIV care and, subsequently, the need that exists for those not engaged at each point. This model is used by federal, state and local agencies to identify issues and opportunities related to improving the delivery of services to people living with HIV across the entire continuum of care. 9 Figure 2. Most PLWHA are t Engaged at All Points of Care 90% HIV Care Continuum Percent of All People with HIV 80% 70% 60% 50% 40% 30% 20% 10% 82% 66% 37% 33% 25% 0% Diagnosed Linked to Care Retained in Care Prescribed Antiretroviral Therapy (ART) Virally Suppressed Source: Centers for Disease Control and Prevention Linkage to care indicates that, once a person is diagnosed, they are linked to and have received HIV medical care within three months of diagnosis. Once a person initiates HIV care, it is imperative for the person to stay in, or be retained in, care. Retention in care refers to the percentage of people who are engaged, on an ongoing basis, in HIV medical care. Viral suppression, meaning that the level of HIV in the circulating blood stream is low, is the goal for every person living with HIV. Antiretroviral therapy (ART) lowers the amount of virus in the body. This allows individuals to live healthy, longer lives and drastically reduces the risk of transmitting the virus to others. Each point of care in the continuum is vital to achieving this goal. Care Continuum models, like the figure above, have been created by different jurisdictions and programs serving PLWHA receiving services through the Ryan White Program. The Care Page 10

12 Continuum for the Ryan White Program shows higher engagement at each point of care than the general population of PLWHA. The Ryan White program served over 546,000 PLWHA in According to data released by HRSA, of the subsets of clients who received medical care through Ryan White in 2010, 76 percent were retained in medical care vi, 80 percent were prescribed antiretroviral therapy vii, and 70 percent had viral load suppression viii, a success for the program. Michigan and New York City have been able to compare Care Continuums for PLWHA and for Ryan White clients and have seen similar results. 11 The Ryan White program is aptly designed to provide the services needed to increase the number of PLWHA engaged at each point in the Care Continuum. The services provided through the program have been shown to successfully do this. Providing this care is the primary task of the program. With the advent of expanded health coverage through the ACA and as PLWHA move into these other forms of coverage for their medical care, Ryan White can intensify its focus on outreach and services related to engaging more people at each point in the continuum and re engaging those who have dropped out of care. Given the decrease in engagement between different stages of care, Ryan White remains a vital component in the HIV care system. The support, or wrap around, services provided by Ryan White that serve PLWHA and the gaps in critical HIV services that will exist under the ACA are described further. How are Ryan White Services Covered in Medicaid and Private Insurance? Tables 7 and 8 list core Ryan White medical and supportive services, respectively, and note whether and to what extent these services are covered by Ohio Medicaid and the state s benchmark insurance plan available through health reform, upon which plans offered on the insurance Marketplace in Ohio are based. As evidenced in these tables, not all core Ryan White medical services and only a select few supportive services are covered by Medicaid and the benchmark plan. These lists lay out the expected gaps in coverage for Ohioans living with HIV once they have transitioned to another form of insurance. The Ryan White program can fill these gaps as clients move into other forms of coverage. vi Of the 291,449 HIV+ individuals who received RW-funded medical care, and had visit dates available, 76 percent were retained in medical care. vii There were 261,865 individuals who received RW-funded medical care and had antiretroviral therapy (ART) data and visit dates available, and 80 percent of these were prescribed ART. viii There were 250,344 individuals who received at least one RW-funded medical care visit and had viral load data available, and, of these, 70 percent had suppressed viral load. Page 11

13 Table 7. Are Ryan White Core Medical Services Covered by Other Forms of Insurance? Core Medical Services Allowable under Ryan White Part B Ohio Medicaid Benchmark Plan (all Marketplace plans are based on this and must cover EHBs) Outpatient and ambulatory medical care Yes Yes AIDS drug assistance program (prescription drugs) Oral health Early intervention services (include counseling individuals with respect to HIV/AIDS; testing; referrals; other clinical and diagnostic services regarding HIV/AIDS) Health insurance premium and costsharing assistance for individuals below 300% FPL Yes Yes (one annual cleaning for adults, other covered dental services available based on medical necessity) premiums, low co pays on some prescriptions Yes (some plans may require prior authorization and/or contain limited drug formularies) (some plans in the Marketplace include dental, but it is not required for adults) Tax subsidies and costsharing assistance available at certain income levels Medical nutrition therapy t specified Yes (nutrition counseling) Hospice services Yes Yes Home and community based health services Yes, determined by level of care need At home private duty nursing, covered with an annual cap of $50,000 Mental health services Yes Inpatient mental health services covered at 30 days each year; 30 outpatient visits per year Substance abuse outpatient care Yes 30 outpatients visits per year Home health care Limited Covered, limit of 100 annual visits Medical case management, including treatment adherence services Included for managed care enrollees with significant health needs Chronic disease management is covered in Essential Health Benefits Source: Ohio Department of Medicaid; Ohio EHB Benchmark Plan: Blue 6 Blue Access PPO Medical Option D4 Rx Option G Another important service that Ryan White provides is health insurance premium and costsharing assistance. While health plans under the Affordable Care Act offer a more comprehensive set of services for PLWHA than Ryan White, individuals who enroll in a Marketplace plan may struggle to afford the monthly premium, annual deductible, and any coinsurance or co payments associated with their health plans. Even with tax credits that help people at certain income levels afford their premiums, private insurance plans can be expensive. Ryan White can help clients pay premiums and cost sharing requirements. Page 12

14 Supportive Services Provided through the Ryan White Program In addition to core medical services, the Ryan White Program covers valuable supportive services (Table 8) that help clients manage their disease. Some of these services include outreach to PLWHA who have been recently diagnosed or fallen out of care, medical transportation, linguistic services, and legal services to help clients access benefits they are eligible for and complete end of life planning. Expanded coverage through the ACA will not replace all of these services and Ryan White will continue to serve an important role in providing an array of services important for many to complete their HIV care. 12 Ryan White will continue to expand its role in providing supportive services alongside many community based organizations that contribute to the safety net, such as housing assistance, food banks, and legal aid, to name a few. The Ryan White Program will continue to provide services such as linkage, retention in care, and medication adherence that are not typically covered by traditional health plans or Medicaid. Getting more people into and maintained in care is a critical public health service that Ryan White provides. Table 8. Are Ryan White Supportive Services Covered by Other Forms of Insurance? Supportive Services Allowable under Ryan White Part B Medicaid Benchmark Plan (all Marketplace plans are based on this and must cover EHBs) Outreach (identification of people with unknown HIV disease or those who know their status so that they may become aware of, and may be enrolled in, care and treatment services) Medical transportation Yes (only if other means of transportation are not available) Linguistic services Yes Respite care for caregivers of people with HIV/AIDS Referrals for health care and other support services Substance abuse residential services Inpatient substance abuse services covered at 30 days each year Housing Food bank/home delivered meals Page 13

15 Psychosocial support Case management (nonmedical) Child care services Emergency financial assistance Health education/risk reduction Legal services Rehabilitation services Yes Yes Treatment adherence counseling Source: Ohio Department of Medicaid; Ohio EHB Benchmark Plan: Blue 6 Blue Access PPO Medical Option D4 Rx Option G Continued Need for Case Management and Supportive Services Ryan White case managers are typically employed by hospitals, local health departments, AIDS service organizations (ASOs), and federally qualified health centers (FQHCs) that also offer other Ryan White funded core and/or supportive services. Case managers play an important role in engaging PLWHA in care; they directly impact an individual s likelihood of staying in care with appointment reminders, transportation services, and outreach, and also refer clients for housing, legal, nutrition, and other services that stabilize the client so they can focus on their health. Ryan White funded case managers have historically assessed their clients for health insurance and other resources, to ascertain if they were eligible for Ryan White services. If Medicaid was an option for the client, the Ryan White case manager assisted with enrollment. Ryan White case managers naturally assumed the role of assisting their clients with the transition to their new insurance as the ACA was implemented in 2013 and Most became certified to provide this type of assistance, known as certified application counselors, or CACs, through the federal Center for Medicare and Medicaid Services (CMS). This assistance is especially valuable for Marketplace plans as provider networks and drug formularies present barriers to access for individuals who have never before had commercial health insurance. Through conversations with Ryan White case managers, several core and supportive services funded by Ryan White were noted as priorities for their clients, even as they are enrolled in more comprehensive health insurance programs. ix Reliable and confidential transportation was the most cited service need of PLWHA, regardless of geography. The service is needed for PLWHA to access medical care, support groups, case manager appointments, food pantries, and other services. Transportation can include bus tickets, gas gift cards, and taxi and other arrangements based on local resources. ix 23 Ryan White funded case managers were interviewed from Cleveland, Columbus, Mansfield, Cincinnati, and Dayton. Page 14

16 Co occurring mental health and/or substance use issues are not uncommon among PLWHA. Especially in more rural areas of the state, it was noted that these services can be difficult to access due to a lack of clinical providers and specifically a lack of LGBTQ (lesbian, gay, bisexual, transgender, queer) friendly providers. Addiction recovery programs are difficult to come by for low income clients and/or Medicaid beneficiaries. Some Ohio counties may have few provider options, and if a client has a history with the organization (e.g. by smoking cigarettes during recovery), they may not be allowed back. Housing and related legal services were also noted often as barriers to stability and self care for PLWHA. For those living with HIV and in unstable housing, which is very common among those who were formerly incarcerated, it can be incredibly challenging to prioritize health care needs. Oral health care was also a common theme in the conversations when considering the ongoing needs of people living with HIV in Ohio. Although most Ryan White clients will be eligible for Medicaid, the program does not allow for a full range of dental treatment options. There are also not nearly enough dental providers accepting Medicaid and Ryan White patients. Case management funded under core and support services of Ryan White (non medical case management is classified as support) also has an important role in the future. Case managers are continuing to be utilized by insured Ryan White clients for assistance in navigating their new health care plans, support of their relationship with Ryan White programs for premium assistance and cost sharing, and providing referrals for other needed services. Health and technology literacy were noted as gaps with the newly insured cohort of PLWHA case managers are acting as translators for the language of the new systems for which individuals find themselves eligible. There is a significant learning curve for the newly insured, and case managers have quickly adapted by taking on the roles of enrollment specialist and health care educator. There is significant stigma and social isolation associated with HIV in Ohio; case managers are also important as social supports for their clients and act as advocates for their clients for other resources in their communities when need outpaces supply. t all PLWHA require case management or other wrap around services, but for those higher acuity PLWHA, many services are often sought to support their care. Recommendations for the Ryan White Program Moving Forward Health Insurance Transition Period Encourage all Parts of the Ryan White program to assess the roles that they can play to assist with clients required move into other forms of health coverage under the Affordable Care Act and their role in supporting PLWHA in maintaining their health. Maintain federal and state funding for Ryan White Program for the foreseeable future, as this is the largest shift in the U.S. health care system in decades and thoughtful and planned change will take time. Page 15

17 Ensure that clients are aware that they do not have to disenroll from the Ryan White program once they move to other forms of insurance. As described above, the Ryan White program will help to complete the continuum of essential services necessary to manage HIV. This message should be communicated through case managers and community based organizations, including anyone who is certified to help with enrollment in ACA plans. Clients should thoroughly assess the Marketplace plans that they are considering for coverage and provider networks. HIV/AIDS medications have been placed on specialty drug tiers in some insurance plans, as well as requiring significant co pays and coinsurance from the insured individual. An official complaint was submitted to the Office of Civil Rights within the United States Department of Health and Human Services regarding this issue occurring in the Florida Marketplace. 13 Continuity of Services Ensure that culturally appropriate, robust case management is available now, and in the future, for PLWHA. This will almost certainly require Ryan White to continue to provide this service, as case management is not comprehensive under other forms of health insurance. 14 Parts A and B in Ohio should evaluate other case management services, in Medicaid and private health plans, to see how these services compare to case management provided through Ryan White to meet the needs of Ryan White clients. This should involve increased coordination between the Ryan White and the Medicaid programs to ensure PLWHA are receiving a full array of services. Clarify, in an official capacity, the services that Part B covers for the entire state (including the Part A regions). Clients should receive a similar set of services from Ryan White regardless of where they live in the state, determined by need. This will create stability for clients, especially as they navigate new health insurance that covers a new set of services. Specific clarification about what Part B funds for clients with private insurance, such as deductibles, premiums, co payments and coinsurance, is even more important in light of expanded ACA coverage. Current and Future Program Improvements Further strengthen the connection between HIV care/treatment and HIV prevention efforts. Although both HIV care and prevention efforts have historically been conducted from the state health department, they have operated in siloes. Prevention is key to reducing the number of new infections; treatment of current PLWHA reduces spread of the disease. Strengthening the connection between care and prevention will maximize the position of the state s public health department in engaging communities and individuals with identifying need, aligning policy with need, improving access to services, and utilizing data already collected to plan for the future. Modernize the eligibility/re application process for Ryan White Parts administered in Ohio. This is especially needed in regions supported by more than one Part, and/or where clients commonly receive services from more than one provider, to reduce the administrative burden on clients. Page 16

18 Re evaluate transportation service programs. The collective reach of current programs is inadequate and some programs have tremendous administrative burdens that ultimately create barriers to PLWHA accessing the service. Given the direct relationship between transportation and the services that keep PLWHA in care and healthy, this service should be administered as comprehensively and simply as possible. Continue to strengthen the network of mental health and alcohol and other drug recovery providers; consider enhanced reimbursement to incentivize joining the Ryan White network. Consider funding additional service categories, including support groups to help individuals cope with social isolation and relieve case managers to work with higher acuity clients. Conclusion The Ryan White Program has entered a period of significant, but measured, change for its clients and the set of services it provides. As required, clients have begun to rely more and more on expanded Medicaid and health insurance plans offered through the Marketplace for their health care treatment needs. As a result, the Ryan White program is assisting more clients than ever with health insurance premiums and cost sharing, as well as continuing to provide comprehensive HIV related treatment and services for clients who have not yet moved to a new form of coverage. The support, or wrap around, services that Ryan White is aptly designed to provide for clients should continue to complete the continuum of care for people living with HIV/AIDs, even after they shift to other forms of insurance. Getting more people into care and maintained in care is a critical public health service that Ryan White provides and should continue to provide to care for PLWHA and reduce new infections. Page 17

19 1 HIV in the United States: At A Glance, Centers for Disease Control and Prevention 2 The Ryan White CARE Act, National Health Policy Forum, September 14, AND A Living History, Ryan White HIV/AIDS Program, 3 HRSA Data Warehouse, Find Grant Results, accessed October 14, U.S. Department of Health and Human Services, Budget in Brief, Fiscal Year Ohio Department of Health, HIV CARE Services Section, HIV Case Managers / Agency Primary Contact 6 The Kaiser Family Foundation. Status of State Action on the Medicaid Expansion Decision, Accessed September 18, National Alliance of State and Territorial AIDS Directors (NASTAD) Press Release and Fact Sheet on ADAP ACA Transition, May 16, Accessed July 14, Ohio Department of Health, HIV Care Services Section, Changes in Ohio ADAP Enrollment, distributed at Ryan White Advisory Meeting on September 11, What is the Care Continuum?, HIV/AIDS Care Continuum, AIDS.gov, Accessed September 18, HRSA, HIV/AIDS Bureau. Continuum of HIV care among Ryan White HIV/AIDS Program clients, U.S., Michigan Ryan White HIV Treatment Cascades, AND HIV care cascades for New York City overall and Ryan White clients: A first look, 12 The Kaiser Family Foundation. Updating the Ryan White HIV/AIDS Program for A New Era: Key Issues and Questions for the Future. April Administrative Complaint filed with Office of Civil Rights, U.S. Department of Health and Human Services by the AIDS Institute and the National Health Law Project, Discriminatory Pharmacy Benefits Design in Selected Qualified Health Plans Offered in Florida. May 29, Coverage of Case Management Services. National Alliance of State and Territorial AIDS Directors (NASTAD). Page 18