Legislative Activity Impacting HHT

Recently, I have taken a more active role in the HHT community as a member of the legislative committee. It is so important for lawmakers to pass legislation that promotes and supports research and development, especially for rare diseases like HHT. I have been pleasantly surprised at how passionate I am about advocating for legislation that will benefit this community. I wanted to write about what the committee has been up to, why it is important to have people to advocate for legislation that will benefit the Cure HHT cause, and to give a bit more information about funding for scientific research.

The legislative committee works with a consultant based in Washington D.C. who is very knowledgeable about laws, regulations, and bills affecting research and healthcare. With this knowledge, the committee can then help advocate for the passage or veto of legislation toward the best interest of HHT patients and their families. Recently, Cure HHT joined with 33 other medical organizations to advocate their position on a piece of legislation that could jeopardize important research funding.

The Department of Defense (DoD) typically has money in its budget allocated to the Congressionally Directed Medical Research Program (CDMRP). This program is specifically designed to award grants to researchers who have high risk/high reward research proposals that will help advance the treatment and cure of diseases that affect military personnel and their families. One may wonder why the DoD needs to allocate money for research when there are so many other government agencies like the National Institute of Health and the National Science Foundation who award many billions of dollars in grants, rather than just focus on military readiness. Larger government funding agencies tend to award grant money to the research of high impact diseases like cancer and heart disease. The CDMRP does allocate money to larger, high impact diseases, but it also focuses on gaps in scientific research – particularly for more rare conditions affecting military personnel. For example, they have helped fund the first double hand transplantation in a combat-wounded amputee and the first neural-controlled lower extremity prosthesis. These are techniques and technologies that directly affect our warfighters, but compared to those who get more common ailments, these types of situations are pretty rare. Therefore, they are not high impact enough for some of the larger government funding agencies to award grant money to.

Please note the difference between ‘high impact’ and ‘high importance’. Of course, everyone who has a rare disease is just as important as everyone who has breast cancer or heart disease and vice versa (I’m generalizing quite a bit, here.), but there are a lot more people with cancer and heart disease than there are with HHT or another uncommon disease. Therefore, money is spent where there is the highest potential impact to treat as many people as possible. That is why the DoD funding that supports Cure HHT is so important!

Congress determines broad categories of research for the CDMRP grant allocation, and ‘vascular malformations’ is one of the current funding categories. HHT, of course, falls into this category. This allows HHT researchers to secure funding from a smaller pool of applicants compared to some of the larger government funded agencies. As a military family affected by HHT, I am very grateful for these DoD funding opportunities! My husband’s grandfather and mother were both in the Air Force, his brother is in the Air National Guard, and he is active duty in the US Army. They all have HHT and benefit from this legislation.

As new legislation is set to pass for the fiscal year 2018, there is wording in the National Defense Authorization Act that could jeopardize the availability and allocation of research funding to the CDMRP. Cure HHT and the 33 other medical organizations have been advocating and reaching out to members of the house and senate to ensure this wording is removed from the legislation before it is enacted. I think that is pretty neat! Wording in our legal documents is so important, and just a couple lines of text may redistribute millions of dollars and affect so many people.

When asking my friends about this topic, they all wanted to know how they could help contribute to research funding in the best way. If there is a condition you are passionate about, like HHT, you can donate directly to the foundation. In recent years, government funding of science has decreased and plateaued. Some of your tax dollars are still going toward research, but there has been a recent switch in who funds the majority of science. Private corporations, philanthropies, and Universities are now leading in the arena of research and development funding. The best way to help is first and foremost to donate to the philanthropy of your choice. You can also help fund scientific research by continuing to pay your taxes and to buy every day products. For example, purchasing a bottle of vitamins may help fund research and development within that company to improve research on how vitamins affect certain diseases.

Another way you can help is to become an advocate for the Cure HHT legislative committee! We are hoping to get advocates in all 50 states. When an issue comes up, like the National Defense Authorization Act, we can call upon these advocates to help reach out to their political leaders about our position. Political leaders really do rely on the opinions of their constituents. You are the ones who elect them! It is in their best interest to listen to your concerns. If you are interested in becoming an advocate, please contact Roy Forey at [email protected]


REGISTER NOW for our upcoming webinar entitled, “Making the Connection Between Legilative Advocacy and HHT Research Funding” scheduled for February 12th from 5-6pm EST.


Update: Since the beginning of writing this blog, the Senate passed legislation that excluded the verbiage that would take away DoD funding for research! A big WIN for the rare disease community!

1 Comment

  1. Ashley Dunton on October 24, 2019 at 5:30 pm

    Hello – I am from Wisconsin and would like to become more involved. Please let me know how. Thanks!

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