Patient Community Urges Writing to Representatives for Help

Kim Fredrickson avatar

by Kim Fredrickson |

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Just breathe, passionate help for the PF journey
Pulmonary fibrosis patients have lots of unique medical needs, especially concerning obtaining medication and supplemental oxygen. A few weeks ago, I wrote two columns about my fight to get liquid oxygen as well as tips to help readers obtain it. Many of you left a lot of comments sharing your stories and suggested we contact our legislators for help.

I’m a real fighter when it comes to standing up for the needs of myself and my loved ones. I’m not experienced in asking legislators for help. I’m grateful to Bill, Reid, Ed, and Taleena for helping me understand the challenges we face, and ways to share our needs with those who represent our interests in Washington, D.C.

The struggle to get liquid oxygen

First, Taleena and Bill helped me better understand why there is such a struggle to get liquid oxygen. Here’s my understanding.

Patients who require high-flow oxygen (6 liters per minute and above) are finding it difficult to obtain liquid oxygen. This forces patients to carry heavy compressed oxygen tanks around with them when they leave their homes. This makes a lot of patients house-bound unless they can find someone to carry the multiple gas cylinders they need to leave home.

Liquid oxygen is lighter, easier to carry, and lasts longer than compressed oxygen, but it is also much more expensive. The widening elimination of liquid oxygen is rooted in a competitive bidding program that Medicare put into effect in 2011. This program was intended to reduce the cost of durable medical equipment such as beds, wheelchairs, and oxygen. Reimbursement for liquid oxygen was reduced because it is the most expensive oxygen delivery system.

Because of Medicare cuts, suppliers are reluctant to supply it — they can’t charge enough to make a profit. Even when suppliers go to heroic lengths to obtain it, we know that if we survive the contract length (five years), the next supplier may refuse it, regardless of the doctor’s Rx. This caused providers to nearly phase out liquid oxygen because they cannot pass the high cost of liquid oxygen to Medicare or the consumers.

Medicare considers its program a huge success. It is saving a lot of money by reducing the amount it pays for oxygen. Unfortunately, this is at the expense of patients who need liquid oxygen. PF patients’ need for higher levels of oxygen only increases as our disease progresses.

It is important to make our concerns and needs known to our legislators

You may want to contact them about the difficulties in obtaining liquid oxygen or other services. You may also want to express your opinion on pending health care bills. A lot of attention has been paid to concerns for those with Medicaid, but not so much about those with Medicare, who pay monthly premiums and have contributed their entire working lives to have this coverage. Many PF patients are on Medicare, or will be. How Medicare is funded has a huge effect on us. Think about the concerns you have. There are lots of ways to make your voice heard.

Call or write your senators and representatives

Reid helped me see that contacting elected officials isn’t a political request. It is telling them about your life. Let them know what it’s like to have pulmonary fibrosis, the medications you take, the cost, and your health concerns. Let them know about the struggles you are personally going through. This may include sharing how hard it is to get liquid oxygen, medications, or the services you need. Make sure they know how this affects your daily life.

You can find out who your senators and representatives are here. Bill provided a sample letter you can send, if you’d like. You can write one letter and send it to everyone via email or by U.S. mail. Feel free to change it to make it your own.

Contact the Pulmonary Fibrosis Foundation

Ed suggested you see if there are any initiatives the PF Foundation recommends or opposes because of our unique health care needs. Two weeks ago they recommended writing to your legislators to oppose the Senate’s Better Care Reconciliation Act (BCRA), and it offered a sample letter. Obviously, you will have your own opinion, but this is a place to start.

I’m not suggesting you take any of these steps if you don’t want to. As PF patients, we’re worn out, and the thought of writing a letter to a legislator, and figuring out where to send it may seem overwhelming. I want to provide you an easy way to make your voice and concerns known, if that’s what you desire.

It is extremely important to me that this column is a safe place for all of us to get good information and connect with one another. I’d love to hear your thoughts below. I’d like comments to focus on your own experience and ideas to make your health concerns known, rather than a political discourse. Thanks, PF friends, and special thanks to Bill, Reid, Ed, and Taleena for helping me with this column.

Please share this post with anyone you feel could benefit, or on social media. We’re in this together!


Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


Taleena Koch avatar

Taleena Koch

Also ask your family and friends to advocate for you. Especially if you are in a situation where taking this on is just too taxing on you. Having other advocate on your behalf is essential. I advocated regularly on my mom's behalf. One thing to note when talking to/writing to your representatives: Oxygen should NOT be considered "durable medical equipment". This is part of the overall problem. Yes, the tanks are "durable medical equipment", but oxygen itself is treated as a prescription medication. It should be a prescription medication. The "equipment" is simply a delivery method for the "medication", much as syringes are for medications that are injected. We need to work together to change the mindset of those in charge of this - our government (legislators, Medicare, etc) and the oxygen suppliers themselves. The oxygen suppliers have a huge misunderstanding of the oxygen need for PF patients.

Kim Fredrickson avatar

Kim Fredrickson

Taleena, Thanks so much for clarifying this important point and being an advocate for all of us who struggle every day with PF :)


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