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:
American Behcet's Disease Association
Amyloidosis Support Groups
Aplastic Anemia & MDS International Foundation
Cicatricial Alopecia Research Foundation
Cystinosis Research Network
Dystrophic Epidermolysis Bullosa Research Association of America
GBS/CIDP Foundation International
Hemophilia Federation of America
Hereditary Neuropathy Foundation
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
Shwachman-Diamond Syndrome Foundation
Stevens Johnson Syndrome Foundation
The Myositis Association
Tourette Syndrome Association
United Leukodystrophy Foundation
Wilson's Disease Association
SOURCE National Organization for Rare Disorders (NORD)