Patient Advocate Groups Establish “I Am Essential” Campaign

Groups Urge HHS to Consider the Needs of the Chronically Ill

December 14, 2011 - Recognizing an absence of the patient voice in the essential benefits debate, patient advocate groups representing those who live with chronic disease and disability have joined together to form an “I am Essential” campaign. The campaign aims to ensure that every American has access to the quality comprehensive and affordable health care as the Department of Health and Human Services (HHS) considers its recommendations for the nation’s Essential Health Benefits package.

The group is comprised of a diverse set of patient organizations, which underscores the communality of their concerns and includes: The AIDS Institute, AIDS United, American Autoimmune Related Diseases Association, Health HIV, Lupus Foundation of America, Men’s Health Network, Mental Health America, National Alliance on Mental Illness, the National Association of Nutrition and Aging Services Programs, The National Grange, National Minority Quality Forum, OWL – The Voice of Midlife and Older Women, RetireSafe, and Women Against Prostate Cancer.

In conjunction with the launch, the campaign is sending a letter to HHS and members of Congress, urging the government to ensure the nation’s Essential Health Benefits package provides for all American health care consumers, particularly those who have chronic health conditions. The Essential Health Benefits package is currently being developed by the HHS Secretary Kathleen Sebelius and her staff. It will include a list of services every private health plan sold through the exchanges and state Medicaid plan must include for those who are newly eligible under the health reform law.

HHS has just finished holding 10 listening sessions around the country to help decide what should be in the Essential Health Benefits package. At each stop HHS heard from hundreds of patients and their representatives on the importance of having a comprehensive, high quality and affordable list of services.

“There are tens of millions of Americans who, like the people we advocate for, live with chronic disease and disability,” said the patient groups in their letter. “A benefit package too narrowly drawn runs the risk of not adequately covering patient needs. Access to affordable, high quality health care saves lives and lowers health care expenditures in the long run.”

The text of the patient groups’ letter is below:

Our organizations serve many of the most vulnerable patient groups in the United States. While our constituents have varying needs, our groups stand united in our concern that the Essential Health Benefits (EHB) package under development must be practical, affordable and inclusive. There are tens of millions of Americans who, like the people we advocate for, live with chronic disease and disability. We are writing to urge you to make certain that the EHB package fully meets the needs of American health care consumers, particularly those who have chronic health conditions.

We want to impress upon you our desire for a comprehensive and balanced approach to the design and development of the EHB package. We are concerned that the recent IOM report on Essential Health Benefits (Friday, October 7, 2011) made affordability its primary focus which may, in turn, result in less robust and inclusive coverage because of the cost of health care.

We understand that individual and specific decisions need to be made in this process, but we hope that in making those decisions you stay mindful of what we think are fundamental principles:

· Patients need access to quality medical services and to specialist care

· Patients need access to diagnostic tools and state-of-the-art protocols for their utilization

· Patients need access to preventive services and adequate medical management of chronic illness

· Patients need access to ample formularies of medicines that provide clinicians with a full range of choices that meet patient needs

· Patients be protected from utilization management techniques which may penalize the chronically ill by limiting their access to care, medicines or treatment

· Patients be provided adequate information about their benefits and have full transparency about cost-sharing so that they can make informed decisions about their care

· Patients be protected from high cost-sharing and specialty tiers that can limit access to lifesaving care and treatment

A benefit package too narrowly drawn runs the risk of not adequately covering patient needs. Access to affordable, high quality health care saves lives and lowers health care expenditures in the long run. We genuinely hope that patient needs and protections remain a priority.

Respectfully,

The AIDS Institute

AIDS United

American Autoimmune Related Diseases Association

American Society for Pain Management Nursing

Asthma and Allergy Foundation of America

Digestive Disease National Coalition

HealthHIV

International Pemphigus and Pemphigoid Foundation

Interstitial Cystitis Association

Lupus Alliance of America

Lupus Foundation of America

Men's Health Network

Mental Health America

The Myositis Association

National Alliance on Mental Illness

National Association of Nutrition and Aging Services Programs

National Marfan Foundation

National Minority Quality Forum

The National Grange

OWL – The Voice of Midlife and Older Women

Platelet Disorder Support Association

Reflex Sympathetic Dystrophy Syndrome Association

RetireSafe

Sjögren's Syndrome Foundation

US Hereditary Angioedema Association

Vasculitis Foundation

Women Against Prostate Cancer

WomenHeart: The National Coalition for Women with Heart Disease

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Comments

Don't get this comment. If you read the IOM report (I have) they didn't say that benefits should be drawn narrowly. You can summarize the 300 or so pages into three bullets: 1. Qualified Health Plans should be built by determining how much money there is to be spent, and then buying as much benefit as possible, NOT BUYING EVERY TREATMENT KNOWN TO MAN AND THEN TRYING TO ROB THE MONEY FROM OTHER PEOPLE AND PROGRAMS. 2. Treatments that cannot be supported with evidence that they are effective should not be covered. 3. State-level mandates should not be included unless there is scientific evidence that the treatments are the best available and actually work. Now, if this list of guidelines excludes a treatment or drug that you care about, you should reconsider your treatment (as a cancer survivor for 30 years now, I've seen my share of "fly-by-night" treatments come and go) and try to remember that every time they add a non-evidence based treatment that drives up the cost of an essential benefit package, fewer people will be insured. WR29