I AM (Still) ESSENTIAL
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1 I AM (Still) ESSENTIAL May 15, 2015 The Honorable Sylvia Mathews Burwell Secretary of Health and Human Services 200 Independence Avenue SW Washington, D.C Re: Adequate Review of 2016 Qualified Health Plans Dear Madame Secretary: We, the undersigned 219 patient and community organizations representing millions of patients and their families, remain dedicated to the successful implementation of the Affordable Care Act (ACA). With the close of the second open enrollment period, millions of Americans now have gained health coverage and the number of uninsured in the country has dramatically decreased. As you begin to review the Qualified Health Plans (QHPs) for 2016, we want to ensure that the many positive patient protections that were included in the Notice of Benefit and Payment Parameters for 2016 and the Letter to Issuers are adhered to and strictly enforced. As we have detailed to you in the past, many patients have had troubling experiences with some Qualified Health Plans (QHPs). In particular, patients living with chronic conditions have found that some plans offer limited benefits, high cost-sharing and discriminatory plan designs, and lack of transparency. We are very pleased that beginning in 2016, you will require plans to address some of these barriers with new transparency and exceptions provisions. Having accurate, complete, and up-to-date lists of drugs and providers that are easily accessible to patients will help them select the plan that best meets their needs. Plans must also disclose any restrictions, including prior authorization, step therapy, and quantity limits for covered medications. The added exceptions processes will help patients access medically necessary medications prescribed by their providers. The Centers for Medicare and Medicaid Services (CMS) has also stated that plans cannot remove drugs from their formularies mid-year unless it is due to the availability of the drug. In addition, CMS has stated that it will review plans for adequate drug coverage and discriminatory plan design. CMS has stated in the past that it would conduct these reviews. However, the growing number of plans engaging in discriminatory practices is evidence that thorough reviews have not taken place. In the Letter to Issuers, CMS cautions issuers from discouraging enrollment of individuals with chronic health needs and provides examples of discriminatory plan designs. One example is if an issuer places most or all drugs that treat a specific condition on the highest cost tiers, that plan design might effectively discriminate against, or discourages enrollment by, individuals who have those chronic conditions. In order to identify discriminatory plan designs, CMS states it will conduct outlier analysis on plan cost sharing, including co-payments and co-insurance, and total out of pocket costs
2 associated with standard treatment protocols for specific conditions. It will also review any medical management techniques, such as prior authorization and/or step therapy, to ensure they are based on clinical guidance, and analyze formularies to ensure drug coverage is consistent with treatment guidelines for certain conditions. We strongly urge you to ensure that CMS fulfills its duties and adequately reviews the 2016 plans in accordance with the above stated requirements and reject QHPs that do not meet the ACA s anti-discrimination standards. There is growing evidence that more plans are placing all medications in certain classes on the highest tier and charging patients high co-insurance. A recent analysis conducted by Avalere found increases between 2014 and 2015 in the number of formulary tiers used by federally facilitated marketplace plans and in the use of cost-sharing for drugs on specialty tiers. The proportion of bronze and silver plans using specialty tier co-insurance greater than 30 percent increased by 14 percent from 2014 to In five classes used to treat cancer, MS, and HIV, more than one-fifth of all exchange plans are requiring 30 percent co-insurance or higher for all drugs in the class a significant increase over We are concerned that without meaningful review and enforcement by CMS, these trends will continue and become worse, creating greater barriers for patients to access their health care. Again, we greatly appreciate all you and the rest of the Department are doing to improve the health of all Americans. We thank you for your continued dedication to improving implementation of the ACA so that it meets the needs of patients throughout the country. Sincerely, 30 for 30 Campaign Action CF ADAP Advocacy Association (aaa+) Adult Congenital Heart Association Advocates for Responsible Care African American Health Alliance AIDS Action Baltimore AIDS Alabama AIDS Alliance for Women, Infants, Children, Youth & Families AIDS Foundation of Chicago The AIDS Institute AIDS Legal Referral Panel AIDS Project Los Angeles AIDS United AIDS Vaccine Advocacy Coalition (AVAC) Alabaster Alliance for the Adoption of Innovations in Medicine (Aimed Alliance) The ALS Association Alzheimer's & Dementia Resource Center American Academy of HIV Medicine American Association on Health and Disability American Autoimmune Related Diseases Association (AARDA) American Behcet's Disease Association American Chronic Pain Association, Inc. American Diabetes Association American Kidney Fund American Lung Association American Society for Metabolic and Bariatric Surgery American Society of Bariatric Physicians The Arc of The United States Asian & Pacific Islander American Health Forum Association of Community Cancer Centers Association of Nurses in AIDS Care 2
3 Behavioral Health & Wellness Bladder Cancer Advocacy Network Boley Centers Brain Injury Association of America California Chronic Care Coalition California Hepatitis C Task Force California Senior Advocates League Cancer Support Community Caregiver Action Network The Cave Institute Center for Public Policy Priorities Centro de mi Salud Citrus Council, National Kidney Foundation of Florida Coalition for Pulmonary Fibrosis Columbia CARES Community Access National Network (CANN) County of Santa Clara HIP program Crohn's & Colitis Foundation of America Delaware HIV Consortium Dialysis Patient Citizens Easter Seals Elder Care Advocacy of Florida Epilepsy California Epilepsy Foundation Epilepsy Foundation Heart of Wisconsin Epilepsy Foundation New England Epilepsy Foundation North/Central Illinois, Iowa, Nebraska Epilepsy Foundation of the Chesapeake Region Epilepsy Foundation of Florida Epilepsy Foundation of Greater Chicago Epilepsy Foundation of Greater Southern Illinois Epilepsy Foundation of Indiana Epilepsy Foundation of Kentuckiana Epilepsy Foundation of Michigan Epilepsy Foundation of Minnesota Epilepsy Foundation of Missouri & Kansas Epilepsy Foundation of Nevada Epilepsy Foundation of New Jersey Epilepsy Foundation of Western Ohio Family Resource Network Federation of Families for Children's Mental Health - Colorado Chapter Fight Colorectal Cancer Florida CHAIN Gay Men's Health Crisis (GMHC) GBS/CIDP Foundation International Georgia AIDS Coalition GLMA: Health Professionals Advancing LGBT Equality Global Colon Cancer Association Global Healthy Living Foundation Global Liver Institute HEALS of the South HealthHIV Hemophilia Alliance of Maine, Inc. Hemophilia Association of the Capital Area Hispanic CREO HIV Dental Alliance HIV Medicine Association HIV Prevention Justice Alliance HIV/AIDS Services for African Americans in Alaska Immune Deficiency Foundation Indiana Rural Health Association International Foundation for Autoimmune Arthritis International Myeloma Foundation Jonah's Just Begun Kentucky Life Sciences Council Kidney Cancer Association Knights of Peter Claver - New Orleans Lambda Legal Latino Commission on AIDS Latinos Salud Let's Talk About Change Leukemia & Lymphoma Society Los Angeles LGBT Center Louisiana AIDS Advocacy Network Louisiana Alumni, Sigma Kappa GNO Louisiana Lifespan Respite Coalition Louisiana Medicare Checkup Campaign Lupus Alliance Long Island/Queens Lupus and Allied Diseases Association, Inc. Lupus Foundation of America Lupus Foundation of America, DC/MD/VA Chapter Lupus Foundation of Arkansas, Inc. Lupus Foundation of Florida Lupus Foundation of Northern California Lupus Foundation of Southern California Lupus LA Lupus Research Institute Lupus Society of Illinois The Marfan Foundation The Mastocytosis Society, Inc. 3
4 Maxima Home Health LLC Medical News - Kentucky Mended Hearts of Central Ohio Men's Health Network Mental Health America Mental Health Association of Connecticut Michigan Association of Community Mental Health Boards Michigan Lupus Foundation Minnesota AIDS Project Moveable Feast NAACP Nashville CARES The National Alliance to Advance Adolescent Health National Alliance for Caregiving National Alliance on Mental Illness National Alliance on Mental Illness Alabama National Alliance on Mental Illness Kentucky National Alliance on Mental Illness New Mexico National Alliance on Mental Illness North Carolina National Alliance on Mental Illness of Ohio National Alliance of State & Territorial AIDS Directors National Alopecia Areata Foundation National Asian Pacific American Families Against Substance Abuse (NAPAFASA) National Association of Hepatitis Task Forces National Association of Hispanic Nurses/CMS National Association of Nutrition and Aging Services Programs (NANASP) National Association for Social Workers Texas (NASWTX) National Association of State Head Injury Administrators National Black Gay Men's Advocacy Coalition National Center for Transgender Equality National Coalition for LGBT Health National Community Pharmacists Association (NCPA) National Grange National Health Law Program National Hemophilia Foundation National Hispanic Medical Association National Kidney Foundation National LGBTQ Task Force National Multiple Sclerosis Society National Osteoporosis Foundation National Patient Advocate Foundation National Prostate Cancer Awareness Foundation National Psoriasis Foundation National Viral Hepatitis Roundtable New England Hemophilia Association New Jersey Association of Mental Health and Addiction Agencies, Inc. New Jersey Mayors Committee on Life Sciences Noah's Hope Obesity Action Coalition The Obesity Society Ohio Association of Community Health Centers Ohio Association of County Behavioral Health Authorities One in Four Chronic Health Organize Now Ovarian Cancer National Alliance Parkinson's Action Network Positive Women's Network - USA Prescription Assistance Network of Stark County, Inc. Prevent Blindness, Ohio Affiliate Prevent Cancer Foundation Project Inform Pulmonary Hypertension Association Racial and Ethnic Health Disparities Coalition Rene Rodriguez, M.D. RetireSafe Rio Grande Valley Diabetes Association Rush To Live Ryan White Medical Providers Coalition San Francisco AIDS Foundation Scleroderma Foundation Services and Advocacy for GLBT Elders (SAGE) SisterLove, Inc. S.L.E. Lupus Foundation Society for Women's Health Research Solo Practice South Carolina Advocates For Epilepsy Southern AIDS Coalition Southern HIV/AIDS Strategy Initiative Specialty Tiers Coalition of Georgia Spina Bifida Association The Sturge-Weber Foundation Test Positive Aware Network 4
5 Texas Healthcare and Bioscience Institute Thrive Alabama Treatment Access Expansion Project United Cerebral Palsy U.S. Pain Foundation, Inc. Utah Health Policy Project Vasculitis Foundation Veterans Health Council Vietnam Veterans of America Virginia Hemophilia Foundation Visiting Nurse Associations of America (VNAA) Women Against Prostate Cancer WomenHeart: The National Coalition for Women with Heart Disease Wound Care Clinic - ESU 5
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