In 2019, after my testimony to the U.S. Congress generated some long-overdue attention on the seriousness of celiac disease in Washington, D.C., the Celiac Disease Foundation retained the firm, Baker Donelson, as our advocacy counsel in Washington. A team led by the chair of the Firms Government Relations and Public Policy Group, Sheila Burke, and Mark Van de Water, Senior Advisor, immediately got to work learning about our issues and then formulating and executing a strategy to secure NIH funding for celiac disease research and to advance other priorities of the celiac patient community.
The Foundation’s relationship with Baker Donelson has yielded remarkable results in a short period of time, including a Notice of Special Interest research funding announcement from NIH, the first-ever for celiac disease.
To share with you some insight into our advocacy work, I recently interviewed Mark Van de Water. Below is a lightly edited transcript of our conversation.
Why is it important that patient advocacy organizations like the Celiac Disease Foundation maintain a presence before Congress and the executive branch agencies, including HHS and USDA?
Because Washington, D.C. has an outsized influence on virtually every aspect of healthcare in the United States, it is essential the Foundation engage meaningfully and consistently with Congress and the Executive Branch to advocate for policies and funding that elevate the varied interests of the celiac community. It is equally important that we engage with patients and caregivers foremost, but also with clinicians and researchers, to help us develop and advocate for policies that better meet all needs.
We focus a lot of our attention on Congress. How do we know that rallying our patient community to contact their congressional representatives to express their concerns or needs regarding celiac disease is effective in getting the change we desire from agencies like the NIH, the CDC, and the FDA?
Congress maintains the power of the purse. All federal agencies are empowered (or restrained) by the regulatory authority or funding that they receive from the Congress. We work to ensure that the leading role Congress plays in developing and implementing federal programs is informed by the concerns and needs of organizations like the Celiac Disease Foundation and their patient communities.
Last year, the celiac disease patient community got a big win when NIH issued a Notice of Special Interest (NOSI) for celiac disease for the first time ever. Yet, we are asking our community again to contact their Congressional members to support including celiac disease research in the NIH budget language again this year. Why is it necessary to rally the patient community to contact Congress year after year?
Congress provides an annual funding appropriation to federal agencies like the NIH. This annual approach gives both the Congress and the agencies it funds, like the NIH, the flexibility to shift priorities and planning from year to year. Continued and vigorous engagement is critical, therefore, to maintain the momentum that the Celiac Disease Foundation and the celiac patient community have established through its hard work since 2018.
Another big win for the community last year was the launch of the Congressional Celiac Disease Caucus led by Congresswoman, Betty McCollum. To date, the Caucus has 38 members. Why are special interest caucuses important on Capitol Hill and what are we hoping the Celiac Disease Caucus will do for the patient community?
Congresswoman McCollum and her staff have been terrific champions of the celiac disease cause. In establishing the Congressional Celiac Disease Caucus, our community now has a much larger voice in advocating for our needs, including gaining broader recognition of celiac disease and the everyday challenges that are created by the disease. You should think of the Caucus as an advocacy force multiplier.
Can you briefly describe the role your firm, Baker Donelson, plays as advocacy counsel to the Celiac Disease Foundation and the celiac patient community?
As the advocacy leader for the entire celiac community, the Celiac Disease Foundation has done a remarkable job in marshaling the expertise and experiences of their community to develop federal policy to accelerate research for treatments and a cure, as well as to advance other priorities to improve the quality of life for celiac patients. Our job as advisors is to monitor activity in Congress or the Executive Branch that might impact the celiac patient community and to make recommendations on how to further the goals of the patient community in Washington, D.C. We cannot be successful without the expertise of the Foundation and the hard work of the patient community, including and especially our more than 500 trained Patient Advocates and the thousands who send emails and letters to the Members.
We are excited about the progress of our advocacy work in Washington, D.C. on behalf of our patient community. There is, however, a lot of work to be done, especially in securing additional research funding for celiac disease. Even with the NOSI, federal government research funding for celiac disease is a fraction of what is offered for diseases with comparable public health impact.
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To Our Health,
Marilyn G. Geller