Lobbying the Congress - for Digestive Diseases

For the past two days, I have immersed myself in research and legislative issues of interest to members of the Digestive Disease National Coalition (DDNC) at its 20th annual public policy forum.     The DDNC is a coalition of professional and patient groups who have an interest in what are generally difficult to diagnose, difficult to treat and often disabling digestive diseases.  Among the patient groups that got together yesterday were:

• American Liver Foundation
• American Pancreatic Association
• Association of Gastrointestinal Motility Disorders
• Ciliac Sprue Association
• Colorectal Cancer Coalition
• Chron's & Colitis Foundation
• Gastroparesis Patient Association for Cures and Treatments
• Hepatitis Foundation
• International Foundation for Functional Gastrointestinal Disorders
• National Pancreatic Foundation
• Oley Foundation

All of the participants have a common interest in pushing changes in law that 1) promote research and early detection programs that could help patients diagnosed in the future; 2) change medicare, medicaid and social security disability rules that would allow them to get the care and financial support that they need without entering a skilled nursing facility. 

Nearly 150 people formed 17 teams that completed over 70 meetings with the staff of Senators and Representatives.   These meeting were informal and provided an opportunity for Congress to hear from patients that usually face challenges trying to find a way to make their digestive track work well enough for them to survive.

In the process,  I learned that a few of the concerns of the coalition are addressed in the the health care reform proposal before congress, especially those relating to medicare and medicaid and insuring individuals with pre-existing conditions. However, the expense of infustion therapy, enteral or parenteral nutrition is so high that current methods of scoring the costs prevented significant changes from current law from being included in the health reform bill.  Most of the others, including those that request increases in NIH funding are on hold until the health care bill passes or fails.   It is my impression, that many of the more popular proposals have their best chances of passing as part of a larger reconciliation bill or as a rider to some "must pass" legislation.

After my meetings, I believe that they provide value but are unlikely to be sufficient to advance the cause of the coalition.  Not all staff members that we met with work for Representatives or Senators on the right committees to change the health research and delivery budgets that are concerns of the DDNC.  Others staff members are knowledgeable but it is not clear from a single visit where the concerns of the DDNC fit relative to concerns on health and non-health related issues of that staff member's boss.   Finally, some meetings were with staff members that may not have the primary responsibility for health issues, or are newly assigned to the issue so that follow up meetings are needed to reach the right person or further educate the staff member.

Clearly, the coalition's paid lobbyists will follow up on the visits.  What could be more important is 1) follow up by both those that came to the policy forum and those who could not; and 2) a stronger web presence that the sponsoring organizations can share to track relevant legislation, the impact of prior efforts of the DDNC, and provide guidance on how individuals can support the DDNC's legislative efforts in a coordinated manner between now and the end of this Congress.  Otherwise, the value of the public policy forum will be lost as time passes.

P.S.   If anyone who reads this blog has information on high-risk pools that are open to new patients, regardless of pre-conditions in states other than Maryland, please contact me via e-mail so that I can get that information to people who are losing their group insurance.