NORD’s Washington Office

NORD provides advocacy for all members of the rare-disease community. We strive to focus public attention on the need for funding for research, for access to treatments, and for fair and reasonable insurance and reimbursement options. Every voice is important in this process, and the NORD staff encourages everyone to become educated about the issues and involved in solving them. You are invited to visit this Web page often to read about ways you can become an advocate. Current areas of interest are listed below. For additional information on these and other topics related to rare-disease advocacy, contact:

Diane welcomes your questions related to policy issues. Medical questions should be directed to NORD’s Registered Nurse (RN@rarediseases.org) or NORD’s genetic counselor (Genetic_Counselor@rarediseases.org).

Lifetime Insurance Caps Bills Introduced in Congress

NORD recently sent the following Legislative Alert to its member organizations:

Health Insurance Coverage Protection Act

HR 6528 Sponsored by Rep. Anna Eshoo (D-14th CA)

S 2706 Sponsored by Sen. Byron Dorgan (D-ND)


Rep. Anna Eshoo and Senator Byron Dorgan have introduced legislation to address the aggregate spending limits placed on insurance policies after which the policy no longer provides coverage. This issue is of particular interest to those with rare diseases who require often high cost orphan drug therapies and chronic care.

Background

According to a 2007 Kaiser Family Foundation survey of employer-sponsored health plans (2007 Annual Survey of Employer Health Benefits):

• Over half of the employer-sponsored health plans and seventy percent of private individual insurance plans set aggregate lifetime caps on covered benefits.



• In some cases smaller firms' health plans lifetime caps are set at a higher level than large firms.



• 76% of employer-sponsored HMO plans and 33% of PPO plans have no lifetime caps.
  
  
• Employer-sponsored plans with caps are most typically set at $2-$3 million.

The Health Insurance Coverage Protection Act will phase in an increase in minimum lifetime caps in private insurance plans to $10 million with an annual inflationary index thereafter. This legislation will allow people with high cost chronic conditions who have private insurance to maintain their coverage and not have to seek public assistance such as Medicaid or state high-risk pools. For many with rare diseases, a lifetime cap of $1 million is sometimes inadequate. Specifically, HR 6528 and S 2706:

• Sets the minimum level of a lifetime cap placed on a group health plan at $5 million for the first two years and $10 million in years three and four.



• Provides for an annual inflationary adjustment to a group insurance plan's lifetime cap based on the consumer price index in subsequent years.



• Exempts health plans offered to businesses with few than 20 employees, but would require that health plans meeting the parameters of the bill be offered to a small business at the employer's request.



• Calls for an Institute of Medicine (IOM) study to determine the number of individuals who reach their lifetime caps.

How you can help

Contact your Representative and Senators asking them to cosponsor HR 6528 or S 2706:

1. Visit www.congress.org and enter your zip code in the small box at the top right and click "GO". The next page directs you to your elected officials.


2. Call the U.S. Capitol switchboard at (202) 224-3121 and ask for your representative's or senators offices. When connected, ask to speak with the legislative assistant (LA) who handles the issue.


3. After identifying yourself, including where you are from in the district/state, tell the LA that you support H.R. 6528/S 2706. State the reasons why you support the bill.


4. Ask for their position and request that your Representative/Senator cosponsor the legislation. You may request a written response to your call.

For more information, please contact Diane Edquist Dorman, Vice President for Public Policy at ddorman@rarediseases.org.

Social Security Administration Seeks Input on Rare Diseases

Regular visitors to this website may recall that the Social Security Administration under Commissioner Michael Astrue has launched an initiative to identify problems encountered by people with rare diseases when they apply for disability assistance through Social Security. Because these diseases are not on the approved list, the severity of their impact may be underestimated. As a result, patients often are initially turned down but later approved. Many people go through unnecessary delay, frustration, and expense in seeking to have an initial decision re-visited.

Commissioner Astrue spoke about this at NORD's annual conference last fall. He also spoke briefly at the 25th Anniversary Gala in May. In December, NORD Vice President for Public Policy Diane Dorman testified at hearings hosted by the SSA, and several of our member organizations provided input for her testimony.

Now the SSA has asked for input on questions related to diagnostic criteria for rare diseases, functional impairment, and criteria for determining when patients are functionally disabled. These are primarily medical issues, and NORD will be distributing a survey to medical professionals.

In the meantime, to assist the SSA in sorting out these issues, we are also interested in stories of individual experiences that help identify problem areas within the current system. If you, a loved one, or a patient have such a story to share, please feel free to contact Diane Dorman in NORD's Washington Office at ssa@rarediseases.org.

The questions for medical professionals working with rare diseases on which SSA is currently seeking input are:

1. Are there any generally accepted functional scores or scales of progression that medical professionals rely upon in determining functional impairment?
2. Are there any generally accepted clinical tests (including genetic or other bio-markers) which can be relied upon to diagnose a disorder or to determine a patient's stage of disease or level of functional impairment?
3. Given the natural history of the disorder generally, is there a certain age (or time since onset) at which the person's functional impairments typically become severe?

Anyone wishing to submit responses to any or all of these questions regarding specific diseases or types of diseases should email their responses to Dorman in NORD's Washington Office (ssa@rarediseases.org).