Thursday, October 6, 2011

Advocacy Newsletter

I was asked to write a little something for our local CFF chapter newsletter about some of the advocacy work that I've been doing as the State Advocacy Chair, and I thought I'd share that letter on here as well. Toward the end of the note, there is a very important action item that I have asked all readers to help with, and I'd like to ask the same of you. And if you have a blog or a Facebook page, share the link with your friends and family too. The more people who participate, the more influence we can have. Happy reading!

My name is Erin Moore, and I have an 18mo old son who has Cystic Fibrosis. Several months ago, I volunteered to work as the State Advocacy Chair, helping to raise awareness of the disease and lead the Foundation’s efforts by building relationships with targeted Congressional offices in order to increase support for the Foundation’s policy agenda. I have asked my friends and neighbors to advocate with me, and today I'm asking for your support as well.

A few weeks ago, I had the opportunity to meet with Congresswoman Jean Schmidt to discuss some of the things going on in the Cystic Fibrosis Community and how she can have a positive impact for the many people living with it. First on my list was to ask for her support in opposing cuts to the Food and Drug Administration (FDA) and the National Institute of Health (NIH). The House’s 2012 Agriculture, Food and Drug Administration Appropriations bill cuts funding for the human drugs section of the FDA by $61 million. Cuts in funding for drug evaluation in the FDA could mean fewer, more overburdened reviewers, slowing the review process. There are 8 promising CF treatments heading to the FDA for review in the next couple of years, and those with cystic fibrosis and other rare diseases can’t afford to wait for urgently needed new medications. The National Institute of Health provides funding for the research that is going on at places like Cincinnati Children's Hospital. Cuts to this funding could mean that this research must be put on hold, and we don't have time to wait.

Another item on the Policy Agenda of the Cystic Fibrosis Foundation that I was able to discuss with Congresswoman Schmidt was the importance of assuring that people with cystic fibrosis receive access to the care and treatment they need to help them live longer and healthier lives. More specifically, I was asking for Congress to help people with CF to have access to high-quality health care that adheres to the current standards recommended by CF treatment and research experts and to protect the ability of cystic fibrosis patients to get the medical care they need by reducing the increasingly prohibitive cost-share burden of this expensive disease.

Congress is currently working on the 2012 budget and many parts of that budget will impact the CF community. Congress has signaled that they are looking to reduce spending. Spending cuts that affect the Food & Drug Administration (FDA), the National Institute of Healthy (NIH) or Medicaid could be harmful to those of us dealing with CF. We need to be the voice that collectively tells Congress why preserving strong funding to these programs is so vital to the health of our community.

In October, the Joint Select Committee on Deficit Reduction will be responsible for finding $1.5 trillion in savings from the Federal Budget. Even though everything in the budget (including FDA and NIH funding) will be on the table in their discussions, conversations with leaders on Capitol Hill have led us to believe that Medicaid is in the greatest danger of significant changes that could leave thousands of people with CF without vital health coverage. As a result, we think our collective voices will be most effective if we focus exclusively on Medicaid in our messages to this committee.

Contacting the members of this specific committee will be critical over the next several months if we want them to consider the very serious implications that cuts to Medicaid will have to people living with Cystic Fibrosis. Please take just a moment to click on this link to let them know that you oppose these cuts -

Additionally, advocacy will continue to be an important part of preserving the quality of life for Cystic Fibrosis patients. Sign up to be an advocate and let your voice be heard in Congress for yourself or your loved ones living with Cystic Fibrosis. It takes no more than a few minutes a month but has an immeasurable impact. Visit to sign up today.

- Posted using BlogPress from my iPad

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