AARDA has been striving for over five years to reach this point. We have worked for the establishment of the NIH Autoimmune Diseases Coordinating Committee through legislation. We then worked for the compilation of a report from the NIH on the status of autoimmune research. When this was done we worked to have a congressional mandate in the Childrens Health Act of 2000 that called for the NIH to develop a National Autoimmune Diseases Research Plan. This year the plan was presented to Congress. Now the plan need to be funded with new money. AARDA and the NCAPG have been working hard to get the plan funded by making congressional visits, encouraging people to write to their congressional representatives and holding a Congressional briefing.

      The NIH Autoimmune Diseases Research Plan is an excellent plan. It covers all autoimmune diseases; it is not disease-specific but will significantly impact every autoimmune disease. This plan can bring funding for autoimmune diseases to an equitable level with other major disease categories, and support many opportunities for new research. It is strongly supported by the National Coalition of Autoimmune Patient Groups of which 21 single-disease groups have signed a letter of support.

      This is an opportunity that must not be ignored. This is truly a "call to action," and you are urged to lend your voice. You can access your congressional offices through AARDAs Web site by clicking on Congress Connect.

      When calling/writting/e-mailing your representatives, use your own words and experience with autoimmune disease. The following talking points may help you with your message.

CONGRESSIONAL TALKING POINTS

1. Autoimmune (AD) diseases are a major health problem.

• There are over 100 known and at least 40 suspect diseases. They are chronic and can be life threatening. They usually last a lifetime. The majority of those afflicted are under the age of 35 when first diagnosed.
• Recent research has shown that AD diseases are 1 of the top 10 leading causes of death in children and women in all age groups up to 65.
• The NIH estimates between 14 - 22 millions have an AD disease and that the prevalence is rising.
• Recent research has proven close genetic relationships among the AD diseases, explaining observed clustering in individuals and families as well as a common pathway of disease.
• Treatments are primarily to suppress the immune system, increasing the risk of other diseases.
• Immunosuppressant treatments have devastating long-term side effects.
• The Institute of Medicine (IOM) reported that the US is behind other countries in immune system self-recognition research, the cause of AI diseases.
• Understanding how to modulate immune system activity will benefit transplant recipients, cancer patients, AIDS patients and infectious diseases.

2. There are significant problems in AD disease diagnosis and treatment.

• They are perceived as rare diseases since there are so many and they affect all body organs.
• AD diseases do not receive a strong focus in medical education.
• Specialists are generally unaware of interrelationships among the autoimmune diseases or advances in treatment outside their own specialty diseases.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and therefore limited in scope. There is limited cross-over among research projects on different diseases.

3. AARDA and its members are working to overcome these problems.

• Public awareness, Physician seminars and Research initiation.
• Close working relationship with the NIH to improve research coordination, e.g. the NIH Autoimmune Diseases Research Coordinating Committee (ADCC).
• The Coordinating Committee was created as a result of bi-partisan Congressional action and has been well-received at the NIH.
• Title XIX of the Childrens Health Act of 2000 asked the NIH for an integrated Research Plan for all the AD diseases.
• 21 national autoimmune patient groups have signed on in support of full funding for this plan.

4. Comparison-use charts if available.

• The NIH estimates up to 22 millions have an AD disease. Cancer affects up to 9 million and heart disease up to 22 million.
• Annual direct health care costs estimated for AD to be in the range of $100 billion, (source-NIH presentation by Dr. Fauchi), cancer, 57 billion (source, NIH, ACS), heart and stroke 200 billion (source NIH, AHA)
• Current NIH research funding for year 2002. AD - $538 million, cancer - $6.2 billion and heart and stroke- 2.2 billion. (Source- NIH)

5. Wrap up and leave with message.

      The NIH estimates additional funding starting at $450 million will be needed to perform the vital integrated research in the Autoimmune Diseases Research Plan that Congress mandated in the Childrens Health Act. The Childrens Health Act included language for additional appropriations for implementation. AARDA members are not asking for specific disease targeted money. We are asking for full funding of additional dollars to fund the plan which targets all autoimmune diseases as a group and improves the cost versus benefit ratio for this disease category. We have not run into any opposition to the plan from any congressional offices, the NIH, or any groups representing a singular AD. Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery.