The following letter was submitted by a coalition of 117 health and disability groups including the Amputee Coalition of America in response to the "Affordable Health Choices Act" --- the senate version of the healthcare reform bill.

June 16, 2009

The Honorable Edward M. Kennedy The Honorable Michael B. Enzi

Chairman and Ranking Member

Committee on Health, Education, Labor Committee on Health, Education,

and Pensions Labor and Pensions

United States Senate United States Senate

Washington, DC 20510 Washington, DC 20515

Dear Senators:

We thank you for your impressive leadership to reform our country’s health system and we

believe the “Affordable Health Choices Act,” released by your Committee on June 9, 2009,

represents a tremendous step forward in our mutual efforts to advance comprehensive health

legislation this year. Collectively, our organizations represent millions of consumers, patients,

providers and workers, many of whom are struggling to afford the care they need to maintain

their health and safety as well as their jobs and quality of life.

In particular, we share your commitment to reforms that will lead to a high-performing health

system and applaud your efforts to ensure that all health insurance plans in the non-group and

small group market would be required to provide a broad range of health benefits. Such a

requirement is essential to ensure that coverage is truly meaningful. Further, no health reform

package should cause people to lose coverage they currently enjoy.

As the “Affordable Health Choices Act” moves towards mark up, we urge you to ensure

individuals have access to a meaningful benefit package in the following two ways:

• First, Do No Harm by opposing any amendment that would preempt or roll back state

benefit laws that ensure coverage of critical services and supplies that address people’s

health care needs; and

• Second, we urge you to support changes to the bill that would improve the development

of a federal benefit standard by requiring the Medical Advisory Council to engage in a

fully open, transparent, and inclusive process that ensures full engagement of consumers,

patients, workers and providers.

Preservation of State Benefit Laws

We are pleased that the “Affordable Health Choices Act” clearly preserves critical state benefit

laws and sets the federal benefits package as the “floor” for coverage available to consumers.

Adequacy of coverage is critically important, particularly to people with disabilities and chronic

conditions. A recent study showed that 62 percent of bankruptcies filed in 2007 were linked to

medical expenses. Nearly 80 percent of those filers had health insurance. These sobering

statistics stem from the fact that many plans do not include the services and supplies needed to

promote health, prevent disease, manage chronic conditions or address other critical health

needs. Over the years, consumer and patient advocates have attempted to address these gaps in

coverage by fighting for benefit protections in state-regulated plans.

As a result, most states have used their longstanding regulatory authority over health plans in the non-group and small group markets to enact critically needed benefit laws to protect their

residents. Today, almost all states and the District of Columbia require state-regulated health

plans to provide adequate coverage for a variety of supplies, medications, equipment, education

and treatments. These laws encompass coverage for cancer screenings and treatment, diabetes

supplies and education, mental health, preventive care, rehabilitation, well-child care and

immunizations, maternity care, and other vital minimum benefit options that are relied upon by

millions of Americans.

If any amendment is proposed that would preempt or roll-back these state benefit laws, we urge you to oppose it. If adopted, such an amendment could lead to individuals suffering a reduction in their coverage – care consumers have fought hard for and that their state legislatures agree are necessary for adequate coverage.

Medical Advisory Council

We applaud the creation of the Medical Advisory Council to set a standard for the essential

minimum benefit package for plans participating in the Gateways. Sensitive decisions about the

specific services and items that must be covered should not be made solely by politicians or

health plan bureaucrats. Instead, we believe a council of non-partisan health experts provides a

preferred way to shape a benefit package that is grounded in science and in the best interest of

consumers and patients.

We believe the Medical Advisory Council can be improved by incorporating the following changes to the bill:

• At least three members of the Council should be consumer or patient representatives,

with full voting rights. And the Council should include experts who can represent the

health care needs of diverse segments of the population, including children, women,

communities of color and people with disabilities. There is precedent for this with the

HIT Policy Committee, created by the American Recovery and Reinvestment Act of

2009. Of 20 members appointed to that Council, three were required by law to be

advocates for patients or consumers, one required to be from a labor organization, and

one required to have expertise in improving the health of vulnerable populations.

• Before the Council could exclude any existing state benefit mandate from the minimum

benefit package, it must be required to consider the impact on patients of excluding that

benefit and provide public justification for its decision.

• The process for determining benefits and coverage levels must be transparent, with

mechanisms to allow for regular public review and comment.

• After a minimum benefit package is established, there must be ongoing mechanisms in

place to regularly track access to health care services, and in particular, whether patients

have difficulty accessing needed services for reasons of coverage or cost. The Council

needs to have the flexibility to modify the benefit package to address any identified gaps

in access, in a timely fashion. In addition, the entity must have the ability to monitor

changes in medical evidence, and to update the benefit package to appropriately reflect

those changes.

Lastly, the Medical Advisory Council should be allowed to fulfill its role as a non-partisan,

expert body to make science-based decisions about benefits in the best interests of consumers

and patients. We urge you to reject any amendments that would exclude coverage of any

specific health care items or services.

We thank you for your leadership and commitment to enacting comprehensive health care

reform this year. And we stand ready to work with you to ensure that such reform includes a

meaningful minimum benefit package that will help keep people healthy, provide care when they

get sick, and end the scourge of medical debt that is causing increasing financial hardship for

millions of American families.

Sincerely,

ACCSES

Advocates for Youth

AFL-CIO

AIDS Action Baltimore

AIDS Action Council

AIDS Patients for Sane Policies

AIDS Treatment Data Network

American Academy of Child and Adolescent Psychiatry

American Academy of HIV Medicine

American Association of University Women (AAUW)

American Association on Health and Disability

American Association for Geriatric Psychiatry

American Cancer Society Cancer Action Network

American Diabetes Association

American Federation of Teachers

American Group Psychotherapy Association

American Heart Association/American Stroke Association

American Hospice Foundation

American Medical Rehabilitation Providers Association

American Network of Community Options and Resources

American Nurses Association (ANA)

American Occupational Therapy Association

American Psychiatric Nurses Association

American Psychoanalytic Association

American Psychological Association

American Speech Language Hearing Association

Amputee Coalition of America

Association for Ambulatory Behavioral Healthcare

Association for the Advancement of Psychology

Association of Assistive Technology Act Programs

Association of University Centers on Disabilities

Asthma and Allergy Foundation of America

Autism Society of America

Bazelon Center for Mental Health Law

BlueWaveNJ

Brain Injury Association of America

Campaign for Mental Health Reform

Center for Advancing Health

Center for Clinical Social Work/ABE

Center for Medical Consumers

Center for Medicare Advocacy

Childbirth Connection

Child Welfare League of America

Clinical Social Work Association

Communities Advocating Emergency AIDS Relief (CAEAR) Coalition

Community Access National Network (CANN)

Community HIV/AIDS Mobilization Project

Consumers for Affordable Health Care Coalition, Maine

Easter Seals

Eastern Maine AIDS Network

Epilepsy Foundation

Families USA

Family Voices

Harlem United Community AIDS Center

Health Care For All

Health Care for America Now

Hispanic Federation

HIV Medicine Association

International Myeloma Foundation

Latinos for National Health Insurance

Lutheran Services in America

Maine Center for Economic Policy

Maine Women's Lobby

Maryland Women's Coalition for Health Care Reform

Medicare Rights Center

Mental Health America

NAACP

National Abortion Federation

National Alliance on Mental Illness

National Asian Pacific American Women's Forum

National Assembly on School-Based Health Care

National Association of Anorexia Nervosa and Associated Disorders

National Association of County Behavioral Health And Developmental Disability Directors

National Association of Mental Health Planning & Advisory Councils

National Association of Neighborhoods

National Association of Pediatric Nurse Practitioners

National Association of Social Workers

National Association of State Mental Health Program Directors (NASMHPD)

National Coalition for Cancer Survivorship (NCCS)

National Coalition for Lesbian, Gay, Bisexual and Transgender Health

National Coalition of Mental Health Consumer/Survivor Organizations

National Committee to Preserve Social Security and Medicare

National Council for Community Behavioral Healthcare

National Disability Rights Network

National Family Caregivers Association

National Foundation for Mental Health

National Latina Institute for Reproductive Health

National Organization for Women

National Partnership for Women & Families

National Physicians Alliance

National Women's Health Network

National Women’s Law Center

New Yorkers for Accessible Health Coverage

NISH

Northwest Federation of Community Organizations

Our Bodies Ourselves

Ovarian Cancer National Alliance

OWL - The Voice of Midlife and Older Women

Pablo J. Davis

Physicians for Reproductive Choice and Health

Project Inform

Raising Women's Voices for the Health Care We Need

Research Institute for Independent Living and Adapted Physical Activity Council

RESOLVE: The National Infertility Association

The AIDS Institute

The Arc of the United States

The Leukemia & Lymphoma Society

The Maine Association of Substance Abuse Programs

The Roosevelt Institution

The Women's Collective

SEIU

United Cerebral Palsy

United Spinal Association

U.S. Psychiatric Rehabilitation Association

U.S. Public Interest Research Group

Washington Community Action Network

Wider Opportunities for Women