3 Policy Principles That Matter When You Have CF

If you have cystic fibrosis like I do, then you know how important it is to protect our health care. That's why we must advocate for three key policy principles that are critical to allowing people with CF to access the high-quality, specialized care we need.

April 9, 2018 | 6 min read
Chad Riedy

For the past eight years, the Affordable Care Act (ACA), while not perfect, has provided protections for those of us with pre-existing conditions. These protections have included not being denied insurance because of having cystic fibrosis and not having annual or lifetime limits. While the ACA remains the law of the land, recent actions by the Trump administration aim to undercut these protections.

When I was born in 1981, my parents were told they should not expect me to live to see my 12th birthday. We did not have therapies like hypertonic saline, inhaled antibiotics, or the vest, and CF transmembrane conductance regulator (CFTR) modulators were a pipe dream -- if they were a dream at all. Today, 36 years later, I have graduated from college, married the love of my life, and am a father to two incredible boys.

Roughly three months ago, I started taking tezacaftor/ivacaftor (Symdeko™) through an early access program; within one month, I saw my lung function increase by 5 percent. This may not seem like a lot to some, but when your lung function is at 28 percent, that 5 percent is the difference between being able to carry your kids up the stairs to bed at night or carrying them around when they are tired, and not being able to do all of the normal “dad duties.”

Access to drugs like tezacaftor/ivacaftor -- coupled with the highly specialized care I receive from my CF care team -- has given me and my family hope: hope that I will grow old with my wife, hope that I will see my boys graduate from high school, go to college, find love, and maybe even start families of their own. Being denied or given restricted access to the drugs and care I need would be denying me and my family this hope. It would be denying all of us the hope of living long, full lives.

This begs a very important question to be asked, answered, and acted upon: What does the CF community need from Congress, and why are these needs critical for our security and wellbeing?

As one of the Foundation's newly appointed national advocacy chairs, I explain our policy priorities below and why they are critical to allowing many people, like me, to live longer, fuller lives.

  1. Oppose the major budget cuts being proposed to Medicaid funding and the barriers to Medicaid access like work requirements, lockout periods, and lifetime limits on coverage.
    Like me, you may be on private insurance through your parents, your employer, or your spouse or significant other and wonder why Medicaid is important to you. In addition to the fact that 50 percent of children and roughly one-third of adults with CF rely on Medicaid, many of the accredited CF care centers around the country rely on Medicaid funding as well.
    CF care centers, such as the clinic I attend at Johns Hopkins Hospital, are located in regional hospitals or universities and rely on Medicaid funding to provide services and care. I would not be the healthy, successful CF patient I am without my care team, which includes my doctor, my physical therapist (who makes sure my airway clearance techniques are on point), and the mental health specialist (who helps me through the anxiety and depression).
    I also meet with a pharmacist, who helps ensure I have the right medicines, and a social worker, who helps with any other issues I may have. All of these people are an integral part of my care team and help me stay as healthy as possible.  
  2. Ensure that the individual insurance market is affordable and accessible to people with pre-existing conditions. Currently, one of the biggest risks to the stabilization of the individual insurance markets is the expansion of short-term health insurance plans. These plans are not subject to the protections in the ACA, including protecting people with pre-existing conditions.
    The administration has proposed expanding the use of short-term insurance plans from 90 to 364 days. While the higher out-of-pocket costs and limited coverage do not make these plans ideal for many of us with CF, the expansion of these plans is likely to divide the individual insurance market into two categories: one for the healthy and another for the old or chronically ill.
    The result is likely to be higher medical costs for those that rely on the individual markets for their insurance and, in some cases, cause insurers to leave the marketplace altogether due to these high costs.  
  3. Support robust and reliable funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).
    Lastly, a slightly brighter spot in all of this is the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Many members of Congress agree that both the NIH and FDA are vital pieces in the discovery, development, and delivery of research and drugs that not only impact our community, but the country as a whole.
    Although I knew they were valuable, I did not truly understand the important role the NIH and FDA have played in the progression of the treatment of cystic fibrosis. If it wasn't for the NIH, the discovery of the molecule that led to the creation of CFTR modulators may not have happened. The benefits that I, and many others, have experienced would be merely a dream. The FDA has been a crucial partner in making sure the CF community gets access to these drugs in a timely manner.
    Together, the FDA and the Foundation have found unique and creative ways to broaden access to these drugs. It is important that both the FDA and NIH remain funded so that we can continue to make enormous strides to cure and fight cystic fibrosis.

What can our community do to protect ourselves and loved ones?

Health care for cystic fibrosis patients must be protected. Right now, the best thing you can do is contact the administration and tell them to withdraw the short-term insurance rule. You can do this easily and quickly through the Foundation's Phone2Action page -- it will take less than three minutes but will make a big difference in our fight for adequate, affordable care.

Together our voices are strong, and we will make them heard.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Chad is an award-winning grill master and amateur Lego builder who was born in 1981. He lives in Alexandria, Va., with his wife and two sons. Chad graduated from Wittenberg University, where he tended bar, traveled to Africa, and earned degrees in both history and African studies. In addition to being chair of Tomorrow's Leaders for the Cystic Fibrosis Foundation Metropolitan Washington, D.C. Chapter, he is a member of the  Adult Advisory Council and National Advocacy co-chair for the CF Foundation. In addition he participates in the weekly vlog Staying Salty. You can find him playing baseball with his kids, doing CF treatments in his basement, and on social media. Follow @cjriedy on Twitter or Instagram

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