Navigation Links
An Open Letter to Members of Congress: The Nearly 30 Million Americans With Rare Diseases Desperately Need Health Care Reform!

WASHINGTON, Sept. 14 /PRNewswire-USNewswire/ -- The following letter was sent today to all members of Congress by the National Organization for Rare Disorders (NORD):

September 14, 2009

Dear Member of Congress:

On behalf of the 30 million Americans who are affected by one of the nearly 7,000 rare disorders, the National Organization for Rare Disorders (NORD) urges you to pass comprehensive health reform legislation to assure that every American has access to affordable, meaningful health insurance coverage. Failure to pass such long-overdue legislation this year would be devastating for people with rare diseases, and for millions of others burdened by chronic illness.

Today, far too many people under the age of 65 with serious medical conditions have inadequate or no access to health insurance. In most areas of the country, in the absence of employer-based coverage, medical underwriting practices by insurers often result in pre-existing condition limits on coverage, higher health insurance premiums and even outright denials of coverage. People with rare diseases customarily incur substantial medical expenses, first in efforts to obtain an accurate diagnosis, and thereafter from hospitalizations, physician office visits, and--for those fortunate enough to have a disease for which there is a treatment--therapies that may cost tens of thousands of dollars per year or more.

NORD and its members, which include approximately 150 patient organizations such as the Moebius Syndrome Foundation, National MPS Society, Prader-Willi Syndrome Association (USA), and VHL (Von Hippel Lindau) Family Alliance, to name a few, believe that for people with rare diseases--and, indeed, for all Americans--four basic principles should be part of any acceptable reform:

  • Health reform must prohibit insurance companies from denying or limiting coverage, or charging patients more for premiums based on health status.
  • Patients must be protected against catastrophic out-of-pocket costs and annual or lifetime insurance caps.
  • Insurers must not be allowed to cancel a policyholder's coverage as a result of a medical diagnosis.
  • Health reform must include tax credits and other direct financing support sufficient to assure that lower and middle income patients can afford coverage.

We recognize and accept that these important health benefits would require that individuals assume responsibility for purchasing health insurance. NORD is prepared to be a constructive force in supporting measures that provide for necessary savings and revenues to ensure that these benefits are paid for and managed in a fiscally prudent fashion.

We are pleased that many Congressional leaders are pursuing policies that achieve NORD's principles. While comprehensive federal health reform cannot be all things to all people, it must not be an empty promise to Americans, including the nearly one in 10 who suffer from rare diseases.

Finally, we understand and accept that compromises will be made as health reform legislation makes its way through the legislative process. While the basic patient protections outlined above are fundamental to any reform, we recognize that there will be design approaches that would not be our first choice. However, we pledge that we will not allow the perfect to be the enemy of the good. Failure to act now, because of seeking a perfect solution, is not an acceptable option in our opinion and would have dire consequences for individuals, families, and our country as a whole.

NORD thanks you for your commitment to meaningful health reform. We are eager to work with you to assure passage of legislation that makes health insurance affordable and accessible for every American, regardless of health status.

SOURCE National Organization for Rare Disorders (NORD)
Copyright©2009 PR Newswire.
All rights reserved

Related medicine news :

1. EQLB Releases Letter to Shareholders
2. Digestive Care, Inc. Receives Complete Response Letter from FDA for PANCRECARB(R) (pancrelipase)
3. In Letter to President, TPC Highlights Foundation Grants in Health
4. The KonLin Letter Issues Featured Stock Update on Nuvilex, Inc. in Its September 2009 Edition
5. Encorium Receives NASDAQ Deficiency Letter Regarding Stockholders Equity
6. American Scientific Resources Signs Letter of Intent to Acquire Intellectual Property
7. Nuvilex to Issue Positive Shareholder Newsletter
8. Cambrex Receives FDA Warning Letter
9. Blue Cross Blue Shield of Michigan Releases Letter Sent to Congressmen John Dingell and Sander Levin
10. August 2009 Mayo Clinic Health Letter Highlights Herbal Supplements, Groin Rashes and Hand Arthritis
11. Harvard Health Letter Special Section Features the Body's Unsung Marvels: The Feet
Post Your Comments:
(Date:11/24/2015)... ... November 24, 2015 , ... Dehydration, defined as a loss of body water ... the hot sun, and heat stroke and death will quickly follow. A normal human ... Kleyne. Every cell, system and structure requires water to function properly. Kleyne, who believes ...
(Date:11/24/2015)... ... November 24, 2015 , ... ... the only authorized OSHA Training Institute Education Center in Northern California, is calling ... holiday season’s major sales events. As the volume of sales and shoppers ...
(Date:11/24/2015)... ... 2015 , ... Add a fresh touch to this year’s holiday festivities with ... bring long-lasting style and cheer to any space. , Holiday plants are more than ... on giving all year long. , “Holiday plants make a room come alive,” says ...
(Date:11/24/2015)... ... November 24, 2015 , ... Take the audience on a journey with TransFrame Cloud ... through a cloud of images without ever setting a single keyframe in Final Cut Pro ... Then use the controls to change the angle and depth of field to create a ...
(Date:11/24/2015)... ... November 24, 2015 , ... The national nonprofit, United Breast ... scheduled for released during the Green Bay Packers vs the Chicago Bears Thanksgiving ... UBCF is honored to be a part of this event, increasing awareness of ...
Breaking Medicine News(10 mins):
(Date:11/24/2015)... iRhythm Technologies, Inc. , a leading digital health care solutions ... participate in the 27th Annual Piper Jaffray Healthcare Conference at The ... . Kevin King , Chief Executive Officer of iRhythm, ... ET. --> --> About ... . --> iRhythm is a privately held digital ...
(Date:11/24/2015)... , Nov. 24, 2015 Teledyne DALSA ... X-Ray image sensing technology, will introduce its CMOS X-Ray ... Exhibition , November 29 to December 3, at McCormick Place ... dynamic detectors for diagnostic and interventional imaging will be on ... Xineos family of advanced CMOS X-Ray detectors is the ...
(Date:11/24/2015)... The uptake of recently approved and pipeline premium products for Type 1 ... 2021, says GBI Research . --> ... Diabetes Mellitus (T1DM), will be a key driver of market growth to ... The uptake of recently approved and pipeline premium products for Type ... to 2021, says GBI Research . ...
Breaking Medicine Technology: