Menu

Action Center

Advocacy Banner

Your Voice Matters: Alpha-1 Advocacy at Home!

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 kerickson@alpha1.org 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!

Sincerely,
[NAME]
[ADDRESS]
[EMAIL]

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 kerickson@alpha1.org 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 Alpha1.org.

Divider

Encourage NHLBI to include Alpha-1 in the COPD National Action Plan

The Alpha–1 Foundation has long advocated for the need to create a coordinated, comprehensive national plan to tackle the COPD epidemic in the U.S. Earlier in the year, the National Heart, Lung and Blood Institute hosted the COPD Town Hall meeting to gather input on what should be included in the first ever National COPD Action Plan. As always, the Alpha–1 community was at the table to ensure Alpha–1 diagnosis and treatment made it into the plan.

We are pleased to report that the first draft of the National Action Plan has been published and is open for comment.

The NHLBI team has brought together the input from all those at the Town Hall but now YOUR voice is critical. In order for the plan to address the problems faced by patients, caregivers, providers, researchers and more, they MUST hear from you directly about what those problems are and what types of solutions you would suggest.

The draft plan addresses five overall goals with specific objectives correlated to each goal:

  1. Empower people with COPD, their families, and caregivers to recognize and reduce the burden of COPD
  2. Promote and sustain awareness, education, and training among health care professionals to increase COPD prevention, detection, diagnosis, treatment and management
  3. Collect, analyze, disseminate, and report COPD-related public health data that drives change and tracks progress
  4. Increase and sustain research to better understand prevention, pathogenesis, diagnosis, treatment, and management of COPD
  5. Integrate recommended national policy, educational, and program changes into the legislative, research, public health, and care delivery structures

These goals provide the framework for public and private action that can be undertaken in the years to come to provide better care, spur more research and implement effective policies for COPD. The opportunity presented by the National COPD Action Plan cannot be overlooked. For years we have fought for COPD and Alpha–1 as the largest genetic predictor COPD to receive the attention and funding that its severe impact necessitates. While the plan itself won’t fix the disparities in funding for COPD research or the lack of public health programs to support COPD prevention, COPD/Alpha–1 diagnosis and management, it IS the first step in the process that will open doors that have previously been closed. It IS the platform that the COPD and Alpha communities can rally around and it must be informed by all those who are affected.

This is your chance to let NHLBI know how important this action is and that we, the Alpha–1 community, want to be engaged in the development and the implementation of the plan.

The NHLBI's website provides a full descirption of each goal. CLICK ON EACH GOAL AND PROVIDE YOUR COMMENT encouraging them to include Alpha-1 in their COPD National Action Plan.

 

Our hope is that together our voices will ensure a plan is created that becomes a living document that will guide the implementation of solutions which will result in improved quality of life and someday cures for COPD.

Divider

Access to Not-for-profit Insurance Assistance - HR 3742

In 2014, the federal government came out with a rule that gave ACA Marketplace plans discretion about whether to accept premium payments from non-profit patient assistance organizations, like PSI or NORD. Since then, insurance plans in 38 states have rejected non-profit assistance checks, which jeopardizes access to insurance for Alphas and many other people who benefit from these programs. The Foundation has endorsed HR 3742, the Access to Marketplace Insurance Act, which will overturn the 2014 rule and help ensure access to non-profit premium assistance.

We need your help to write your Representative and ask him or her to co-sponsor the bill!

How to helpplus

Steps:

  • Find your Reprasentative at www.house.gov and enter your zipcode
  • Find the contact form on your Representative's website.
  • Paste the email below into the form. Be sure to personalize the email.

Sample Emailplus

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.”

Many Alphas have extremely high out-of-pocket costs and so rely on non-profit, third-party assistance organizations to help pay for their health insurance premiums. This assistance is threatened for people enrolled in the new ACA marketplace plans since an HHS policy has allowed plans to reject payments from non-profit third-party assistance organizations. In fact, plans in 38 states have used this discretion to refuse these payments, which jeopardizes access to insurance for the people using this critical support.

We hope that Congress will let charities be charities and ensure that people can maintain access to their health insurance. Please co-sponsor H.R. 3742, the Access to Marketplace Insurance Act, which would require health insurance companies to accept third party payments from non-profit organizations. H.R. 3742 would benefit our Alpha community as well as many others with rare, chronic and acute conditions. The bi-partisan bill was introduced by Representative Kevin Cramer (R-ND). I hope that we can count on your support!

Sincerely,
[NAME]
[ADDRESS]
[EMAIL]

Divider

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.