Patient Advocates Cite Insurance Caps as Critical Difference in Senate and House Health Care Reform

Advocacy groups warn that Senate version of bill would not eliminate caps for millions of Americans

WASHINGTON, Jan. 14 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders and 34 other patient advocacy groups are warning that the Senate health care reform bill would not eliminate annual and lifetime insurance caps for many Americans, contrary to common belief.  The groups say millions of people would still be vulnerable to loss of their insurance benefits if provisions from the Senate bill are adopted in the final legislation.  

"This is a critical issue for patients with rare diseases, as it should be for all patients," said Peter L. Saltonstall, NORD's president and CEO.  "As the House and Senate negotiate health care reform, we must keep in mind the central focus, to create medical security. Capping insurance payments, either on an annual or lifetime basis, can lead to substantial limits on medical care for patients."

Saltonstall said NORD often hears from patients who are worried about being unable to afford their treatment or impoverishing their families if they should lose health benefits as a result of reaching a cap.  For instance:

• A 24-year-old man with hemophilia anticipates that his lifetime medical benefits will be exhausted in about three years.
• The family of a 9-year-old child diagnosed with aplastic anemia at age 4 worries that he could exhaust his benefits very early in his life.
• Parents of a high school student stricken with life-threatening illness at age 16 worry about losing his insurance coverage, which has a $1 million lifetime cap.

NORD was one of 63 patient advocacy groups that sent a letter this week to Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) urging elimination of all annual and lifetime insurance caps.  Advocacy groups also sent a letter to President Obama.

Many private insurance plans include annual or lifetime caps.  Typical lifetime caps are in the range of $1 million or $2 million -- a figure that can be reached relatively quickly by people with rare, chronic, or catastrophic diseases.    

The patient advocates are urging that Congress adopt the House provisions on lifetime limits, which would eliminate such limits in all private insurance plans in 2010.  This is in stark contrast to the Senate version of health reform, which would allow lifetime limits to continue indefinitely on existing plans.

Regarding annual limits, the groups urge adoption of the House provisions with one exception—that the final legislation incorporate a Senate provision restricting annual caps until the caps are fully eliminated in 2013 for new plans and 2018 for existing plans.

Advocacy groups joining NORD in urging Congressional leaders to adopt the House provisions on this issue include:

Alpha-1 Association

Alpha-1 Foundation

American Behcet's Disease Association

Amyloidosis Support Groups

Aplastic Anemia & MDS International Foundation

Cicatricial Alopecia Research Foundation

COPD Foundation

Cystinosis Research Network

Dystrophic Epidermolysis Bullosa Research Association of America

GBS/CIDP Foundation International

Hemophilia Federation of America

Hereditary Neuropathy Foundation

Histiocytosis Association

Immune Deficiency Foundation

Kennedy's Disease Association

MHE Research Foundation

National Ataxia Foundation

National Hemophilia Foundation

National Marfan Foundation

National MPS Society

National Multiple Sclerosis Society

National Tay-Sachs & Allied Diseases

National Urea Cycle Disorders Foundation

Osteogenesis Imperfecta Foundation

Reflex Sympathetic Dystrophy Syndrome Association

Sarcoma Foundation of America

Scleroderma Foundation

Shwachman-Diamond Syndrome Foundation

Stevens Johnson Syndrome Foundation

The Myositis Association

Tourette Syndrome Association

United Leukodystrophy Foundation

Vasculitis Foundation

Wilson's Disease Association

SOURCE National Organization for Rare Disorders (NORD)