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Calling all supplemental oxygen users

We are teamed up with many organizations to collect information that will help healthcare providers, oxygen suppliers, insurance companies, Medicare, and others to better understand what types of home oxygen services are being used, and what kinds of challenges and problems patients face. The results of this survey will be used to develop strategies to improve supplemental oxygen services for patients.


Your Voice Matters: Alpha-1 Advocacy at Home!

With the 2016 election right around the corner and pressing issues facing the Alpha community, now is the perfect time to engage with your Representative and Senators in Congress! The best part is that you don’t need to travel to Washington, DC to engage in advocacy - here are some easy ways that you can advocate for Alphas at home!

Follow Your Members of Congress on Social Mediaplus

A great first step is to follow your Members of Congress on social media, which can help you learn more about them and policy matters happening in Washington. Below we have outlined the steps to take to find out who your representatives are and to get involved:

  1. Find your Member of Congress:
  2. Sign up for your Member of Congress’ newsletter on their website
  3. “Like” your Member of Congress on Facebook so you can keep up to speed with their activities.
  4. Follow them on Twitter.

Email Your Members of Congressplus

A great second step is to email your Members of Congress. Most offices have contact forms on their websites where you can paste in an email message to them.

  1. Find your Member of Congress:
  2. Find the contact form on their website.
  3. Paste the sample email below into the form. Be sure to personalize it!
  4. Let us know once you’ve sent the email by contacting Karen Erickson at the Foundation.

Sample Email: Oxygen Access and Choice – Let CMS know Alpha-1 patients are being harmed

We have drafted below a sample email for you to use. This email focuses on access to oxygen for people on Medicare, many of whom have had access problems in recent years as Medicare has changed how it will select oxygen providers. Your voice can make the difference in this fight to ensure appropriate access for our community. Please be sure to personalize the letter to include details about any issues you or people you know have had accessing oxygen.

Sample email:

Dear Senator/Representative [INSERT NAME],

I am your constituent and my family is affected by Alpha-1 Antitrypsin Deficiency (Alpha-1).

Alpha-1 affects about 1 out of every 2,500 people in the US or more than 100,000 people in sum, equally affecting men and women including individuals in all races and ethnicities. An estimated 19 million people in the U.S. have one normal and one defective gene and are Alpha-1 carriers. Alpha-1 is the most common genetic risk factor for COPD and Alpha-1-related lung disease is commonly called “genetic COPD.”

I’m writing to tell you about how Medicare coverage of oxygen is affecting lung-affected Alphas who use supplemental oxygen. Unfortunately, the recent shift in Medicare to competitive bidding for oxygen has led to many Alphas being forced to switch oxygen providers and oxygen modalities. These changes harm individuals’ health and quality of life by making it harder to work, exercise and even leave the house.

We hope that Congress will work to improve Medicare coverage of oxygen to help solve these problems for our community. I hope that we can count on your support!


Attend an Eventplus

One of the best times to meet with your member of Congress is when he/she is home during a district work period. Back home, their calendars tend to be more flexible than they are in DC. Since it is an election year, Members will be spending even more time than usual in their districts holding events this summer.

  1. Check out your Member of Congress’ website, social media accounts, and their campaign websites (if they are up for re-election) to find out if he or she is holding any public events in your area.
  2. If you are attending an event, feel free to bring information about Alpha-1, your support group, and/or the Foundation. Feel free to print a hard copy of the email above and bring that with you, as well.
  3. If you plan to attend an event and have further questions, please contact Karen Erickson at the Foundation.

No matter which option (or options!) that you choose, please watch for future advocacy communications from the Foundation! We are rejuvenating our grassroots advocacy network and will need your help to advocate for Alphas. Stay tuned!

Thanks for your commitment and voice. Be sure to check back and keep an eye out for Alpha-1 Actions on our Facebook page, in our Community Currents and at


Take Action - Alphas Who Have Received and organ transplant

Let the FDA know how transplant impacts your life and that you want to be part of shaping future treatments. We will bring your comments to Washington, D.C.

DEADLINE is Sept. 15, 2016