September 24, 2003

Dear Medicare Conferee:

We are writing as local, regional and national organizations that provide services to or advocate on behalf of the roughly one million people in the United States living with HIV/AIDS. While beneficiaries living with HIV/AIDS comprise a very small portion of the overall Medicare population, Medicare is a major source of health care for people living with HIV/AIDS.

• Approximately 19 percent of all people living with HIV/AIDS who receive regular health care qualify for and receive coverage under Medicare.
• In 2002, Medicare spent an estimated $2.1 billion providing health care services to people living with HIV/AIDS, making Medicare the second largest source of funding for HIV/AIDS care after Medicaid.

Given the central role of pharmaceuticals in the current standard of treatment for HIV and the enormous reductions that have been observed in HIV/AIDS morbidity and mortality, the absence of a prescription drug benefit in Medicare is a glaring omission that prevents Medicare from providing an even minimally acceptable level of health care coverage for this population. Further, the absence of drug coverage for Medicare beneficiaries creates strains on other public programs, including Medicaid and the Ryan White CARE Act. Currently, many people living with HIV/AIDS are unable to obtain HIV medications because limited funding for the CARE Act has led at least nine states to establish waiting lists. Sadly, in the past month, news reports have documented the deaths of two people in West Virginia who died on waiting lists to receive HIV medications through the CARE Act's AIDS drug assistance program (ADAP). If Medicare were to cover prescription drug benefits for Medicare beneficiaries, this could provide essential and timely relief to allow the CARE Act's limited discretionary dollars to provide HIV health services to persons without Medicare or other sources of health coverage.

One of the contentious issues in the Medicare conference reportedly has to do with reconciling differences related to the handling of drug coverage for Medicare beneficiaries who also receive Medicaid (dual eligibles). A very significant percentage of people with HIV/AIDS in Medicare are believed to be dually eligible for Medicaid. We believe that an essential outcome of the conference is legislation that strengthens guarantees that dual eligibles and other low-income individuals will have access to the full compliment of prescription drugs that they need. We have concerns with the approaches taken to covering the dual eligibles by both the House and the Senate.

The House would provide dual eligibles with the same Medicare drug benefit as other Medicare beneficiaries—a principle we support and a policy choice that could provide necessary and potentially timely relief to states struggling to finance their Medicaid costs for Medicare beneficiaries. The long phase-in period before Medicare assumes full responsibility for providing drug coverage to duals eligibles (in 2019), however, fails to provide meaningful short-term relief to states. Further, the scope of the underlying House drug benefit is insufficient for low-income Medicare beneficiaries who have extensive drug costs. The complete lack of drug coverage for all beneficiaries during the "donut hole", annual drug expenses between $2,000-$4,900 is especially problematic, inasmuch as virtually every person living with HIV/AIDS on antiretroviral therapy will have annual drug costs two to four times this amount. Low-income individuals would not have the resources to pay for drugs during the donut hole—even when this is life-or-death necessity.

The Senate approach, on the other hand, is equally faulty. The Senate would enshrine a discriminatory policy by providing dual eligibles—among the most vulnerable Medicare beneficiary groups due to their extensive health needs and low-incomes—with no Medicare drug benefit. While the Senate would provide 100% federal financing for the Part B premium for dual eligibles, this is not significant fiscal relief for state Medicaid programs given the size of their prescription drug costs. State Medicaid programs are stressed in large measure because they are making up for gaps in Medicare coverage and the Senate would legislate this inequity. Since Medicaid drug coverage is optional, and states have been struggling to control rapidly increasing prescription drug costs in Medicaid and have already cut deeply in other parts of their programs, some states may feel forced to restrict drug coverage or drop coverage (such as by eliminating drug coverage for the "medically needy").

We fear that both the House and Senate's handling of drug coverage for dual eligibles could leave dual eligibles without the prescription drugs they need. Under the bills as proposed,

• Dual eligibles are left to depend on Medicaid, and state fiscal pressure may lead states to drop or eliminate current levels of drug coverage; or
• Dual eligibles receive a Medicare drug benefit that does not provide adequate coverage, by excluding drug coverage during the donut hole or by charging co-insurance that is unaffordable.

Specific Recommendations
While people living with HIV/AIDS have much at stake in numerous policy choices to be decided in conference, we are limiting our comments to a small number of recommendations that could go a long way in making a new Medicare drug benefit both workable and affordable for people living with HIV/AIDS.

Cost-Sharing
For persons with high drug costs, including people with HIV/AIDS, the House cost-sharing structure of charging a fixed amount of $2 or $5 per prescription is the only structure that is affordable. Even if cost sharing is limited to 2.5% of the drug cost (which the Senate bill would do for some low-income people during the initial coverage period), cost sharing for the typical person with HIV/AIDS could be in the range of $85/month, a level that is prohibitively high for low-income people.

Low-Income Protections
The Senate low-income provisions must be retained. Whereas both the House and the Senate would subsidize drug coverage for low-income people, in the House these protections extend only to persons below 135% of poverty. The Senate would also protect persons between 135-160% of poverty. For persons in this income range, 20% cost sharing on drugs (as in the House bill) that could cost $1,000—$2,000 per month would mean that these individuals could not access life-saving HIV/AIDS medications.

Formulary Development
The provisions requiring private plans administering the benefit to develop formularies that include two drugs in each therapeutic class do not guarantee adequate access to lifesaving antiretroviral medications to treat HIV/AIDS. Antiretroviral drugs are offered in combinations, and multiple factors such as side effects and the development of drug resistance frequently trigger the need for changes in those combinations over time. HIV-treating physicians and their patients must have access to every drug that targets the virus. We respectfully request that plans be required to include the entire armamentarium of antiretroviral drugs, including new drugs that may come to market, on the Medicare formularies.

Further, we believe that it is vital that each plan providing benefits operate a transparent and accessible process that operates 24 hours a day, 7 days a week, that will allow consumers and prescribers a vehicle to request medically necessary medications not currently found on any preferred drug list it maintains. Persons living with HIV/AIDS, as well as other Medicare beneficiaries with significant prescription drug needs, often require a broad range of medications to treat symptoms, side effects and co-morbid conditions, as well as the primary disease.

Immigrant Health
Senate provisions related to immigrant health coverage must be retained. This legislation provides an important opportunity to permit states to offer health coverage through Medicaid and SCHIP to lawfully residing low-income immigrant children and pregnant women. The HIV epidemic in the United States is concentrated in certain states that often have high immigrant populations. States often recognize the need to provide health coverage to immigrant children and pregnant women, and federal matching funds should be available to states that choose to do so.

The issues that you are addressing are frequently contentious and divisive. This is in large measure a result of their importance to millions of Americans who depend on Medicare. As you work to seize this historic opportunity to extend drug coverage, we respectfully ask you to ensure that all of the choices you make lead to a drug benefit that not only is as generous as existing resources allow, but that also takes into consideration the important subset of the Medicare population with extensive and high-cost drug needs.

We would welcome the opportunity to work with you and your staff to develop legislative and report language that are responsive to the concerns we have raised. If you have any questions, or need additional information, please contact Christine Lubinski, Executive Director of HIV Medicine Association Phone: 703-299-1215, ext. 2 Fax: 703-299-0473 or Email: Clubinski@idsociety.org

Thank you for your attention to this matter,

Sincerely,

Aarth Ministries, Washington D.C.
ActionAIDS Philadelpia, PA
Action for a Better Community Inc./Action Front Center, Rochester, NY
ACT UP Atlanta, GA
ACT UP/Cleveland, OH
ACT UP East Bay, Oakland, CA
ACT UP/New York, NY
African American Office of Gay Concerns, Newark, NJ
AIDS Action Baltimore, MD
AIDS Alliance for Children, Youth & Families, Washington, DC
AIDS Care Project/Pathways, Boston, MA
AIDS Education Global Information System/AEGIS
AIDS Foundation of Chicago, IL
AIDS/HIV Health Alternatives, North Hollywood, CA
AIDS/HIV Services Group, Charlottesville, VA
AIDS Housing Assocation of Tacoma, WA
AIDS Legal Council of Chicago, IL
AIDS Medicare Project, San Francisco CA
The AIDS Policy Project, Philadelphia, PA
AIDS Service Organization Network of Alabama (ASONA), Mobile, AL
AIDS Treatment Activists Coalition, USA
AIDS Treatment Data Network, New York, NY
Alliance of AIDS Services – Carolina, Raleigh, NC
AMITY Outreach Ministries, Timberlake, NC
Asian & Pacific Islander Wellness Center, San Francisco CA
Aspirations Wholistic Tutorial Services, Baton Rouge, LA
Bailey House, Inc., New York, NY
Being Alive: People With HIV/AIDS Action Coalition of Los Angeles, CA
Betances Health Center, New York, NY
Boulder County AIDS Project, Boulder, CO
Cascade AIDS Project, Portland, OR
Catholic Charities AIDS Ministry, Portland, OR
Catholic Charities CYO, San Francisco, CA
Catholic Charities Housing and Health program, San Francisco, CA
The Center for AIDS: Hope & Remembrance Project, Houston, TX
Center for AIDS Research, Education and Services (CARES), Sacramento, CA
The Center for Women Policy Studies, Washington D.C.
Christie's Place, San Diego, CA
Columbus AIDS Task Force, OH
Council of Religious AIDS Networks, Garrison, NY
Covenant Presbyterian Church (USA), Durham, NC
Duke AIDS Research and Treatment Center, Durham, NC
Duke AIDS Legal Assistance Project, Duke University School of Law, Durham, NC
Families In New Directions, Inc., Los Angeles, CA
Florida AIDS Action, Tampa, FL
FOUND, Inc., Los Angeles, CA
Friends For Life Corporation, Aloysius Home & AIDS Resource Center, Memphis, TN
GAY Fiesta Inc., San Antonio, TX
Gay Men's Health Crisis, New York, NY
Grateful, Inc., Baltimore, MD
Hands United Together/HUT, Panorama City, CA
The Havens, Charlotte, NC
HealthGAP (Global Access Project), New York, NY
Helping Hand Ministry Foundation, Inc., Mobile, AL
Hemophilia Association of New York, NY HIV Advocacy Council of OR and SW Washington, Portland OR
HIV Alliance, Eugene, OR
HIV and Hepatitis.com, San Francisco, CA
HIVCare Services, Saint Francis Memorial Hospital, San Francisco, CA
HIV Medicine Association, Alexandria, VA
Housing Works Inc., New York, NY
Hyacinth AIDS Foundation, New Brunswick, NJ
Infectious Disease Clinical Services of Cape Cod Hospital HIV Program, Hyannis, MA
Interfaith Council for the Homeless of Union County, Plainfield, NJ
International AIDS Empowerment, El Paso, TX
International Black Women's Congress, Norfolk, VA
Jersey City Connections, Inc., Jersey City, NJ
Kitsap County Health District HIV/AIDS Services, Bremerton, WA
Life Foundation, Honolulu, HI
Lifelong AIDS Alliance, Seattle, WA The Living Room, Fresno, CA
Long Island Association for AIDS Care, Inc. (LIAAC), Huntington Station, NY
Maine AIDS Alliance, Augusta, ME
Marketing, Management & Health Care Consulting, LLC., Oakland, CA
Medical Advocates for Social Justice, Chicago, IL
Medical College of Ohio Hospital Ryan White Title III & IV, Toledo, OH
Metrolina AIDS Project, Charlotte, NC
Michigan Positive Action Coalition (Mi-Poz), Grand Rapids, MI
Minnesota AIDS Project, Minneapolis, MN
Minnkota Health Project, Moorhead, MN
Mission Neighborhood Health Center/ HIV Clinic Esperanza, San Francisco, CA
Montefiore Medical Center – The Women's Center, Bronx, NY
Monterey County AIDS Project, Seaside, CA
National Association of People With AIDS, Washington, DC
National AIDS Treatment Advocacy Project (NATAP), New York, NY
National Association for Victims of Transfusion-Acquired AIDS, Bethesda, MD
National Health Law Program, Washington D.C.
Natividad Medical Foundation, Salinas, CA
New Hanover Regional Medical Center/Zimmer Center, Wilmington, NC
New Jersey Lesbian and Gay Coalition AIDS Task Force, New Brunswick, NJ
New Jersey Women and AIDS Network, New Brunswick, NJ
New York Peer AIDS Education Coalition, New York, NY
North Carolina Council for Positive Living, Burlington, NC
North Carolina AIDS Policy Center, Asheville, NC
North Central Bronx Hospital Ryan White Case Management Program, Bronx, NY
NYC AIDS Housing Network, Brooklyn, NY
Ohio AIDS Coalition, Columbus, OH
The People's Caucus, San Antonio, TX
Persons Living with HIV Action Network of Colorado, Denver, CO
The Phoneix Group Foundation, Inc., Atlanta, GA
Pierce County AIDS Foundation, Tacoma, WA
Positive Wellness Alliance, Lexington, NC
Priscilla's Home (a place to sojourn), Spanish Fort, AL
Project Inform, San Francisco, CA
Provincetown AIDS Support Group dba AIDS Support Group of Cape Cod, MA
Puertorriqueños Asociados for Community Organization (P.A.C.O.)/G.R.I.P., Jersey City, NJ
RRD Outreach Ministry, Virgin Islands
Ryan White Title I Las Vegas EMA/ Ryan White Care Strategies Committee, NV
Ryan White Title III EIS Grant, Medstar Research Institute, Washington Hospital Center, D.C.
San Francisco Community Clinic Consortium, San Francisco, CA
San Francisco Suicide Prevention AIDS/HIV/HepC Nightline, CA
SMART, Inc. (Sisterhood Mobilized for AIDS/HIV Research & Treatment), New York, NY
Southeast Idaho AIDS Coaliton, Pocatello, ID
Southern Tier AIDS Program, Inc., Johnson City, NY
South Mississippi AIDS Task Force, Inc., Biloxi, MS
SPECIAL AUDIENCES, Inc., Newark, NJ
Spokane AIDS Network, Spokane, WA
Tennessee AIDS Support Services, Inc. (TASSI), Knoxville, TN
Test Positive Aware Network, Chicago, IL
Texas AIDS Network, Austin, TX
TIICANN /The Title II Community AIDS National Network, Washington, DC
Toya Management Services, Highland, IN
Treatment Action Group, New York, NY
Triad Health Project, Greensboro, NC
Vermont People with AIDS Coalition, Montpelier, VT
Virginia Organizations Responding to AIDS, Arlington, VA
Visionary Health Concepts Inc, New York, NY
West Alabama AIDS Outreach, Tuscaloosa, AL
Western Pacific Re-Hab, North Hollywood, CA
West Virginia HIV Care Consortium, Wheeling, WV