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What's next in Healthcare Reform?

The failure of the "skinny repeal bill" has sparked some bipartisan work on the future of Healthcare.  Both the House and the Senate have taken action. 

Alphas need to do the same.  There is still a lot of uncertainty surrounding healthcare, and in particular around the subsidies paid to individuals who purchase health insurance on the private market.

In the Senate, the Health, Education, Labor and Pensions (HELP) Committee, chaired by Sen. Alexander (R-TN) and ranking member Sen. Murray (D-WA),  will hold committee hearings the first week of September on ideas to stabilize and strengthen the individual health insurance market by providing long-term funding for Cost Sharing Reduction (CSR) payments and increased state flexibility in plan design.

The House Problem Solving Caucus, co-chaired by Reps. Reed (R-NY) and Gottheimer (D-NJ), developed proposals to maintain CSR payments, raise the employer insurance mandate threshold from 50 to 500 employees and permit more state flexibility with essential health benefit requirements

All the while, President Trump has threatened to halt the CSR payments to insurers.  Such action would significanly disrupt the inurance marketplace and lead to big premium increases and other insurers leaving the marketplace all together. 

They need to hear from us.  We can thank them for their committment to bipartisan work and educate them about our unique needs for access to care in the Alpha-1 community.

What can we do?

Continue to reach out to your congressmen.  Let them know about your needs as an individual affected by Alpha-1.

Email, tweet, call and post to the social media pages of your congressmen. and Tell them that you and other Alphas need access to care. We need their support for:

  • No pre-existing conditions restrictions
  • No annual or lifetime caps on essential health benefits (EHBs)
  • A reasonable limit on out-of-pocket expenses
  • Insurance coverage up to age 26 on a parent’s plan


Senate Votes on ACA Repeal Fail.

After a few false starts and postponed votes, the Senate voted this week on three main ACA repeal and repeal and replace bills, all of which failed. Last night, a vote on the Health Care Freedom Act, the “skinny repeal bill”, failed 49-51, with Senators Collins (R-ME), McCain (R-AZ) and Murkowski (R-AK) joining Democrats to oppose the bill. Debate on the issue has now closed and the Senate will move on to consider other legislation for now.

Thank you to all of the Alpha advocates who contacted their Senators and Representatives over the last several months. Your stories, calls and letters have made a difference!

What happens next? Some members of both parties in Congress have said they want to turn to bipartisan policymaking to stabilize insurance markets and make changes to the ACA. There are reports that others are continuing to work on an ACA repeal bill that could garner sufficient support among Republicans.

We are closely monitoring this debate and know that our work is not done! As long as Alphas face access challenges, we will continue our work with policymakers of both parties to ensure access to care. We will update the community as the debate progresses.

What you can do TODAY: plus

If you live in Alaska, Colorado, Iowa, Kansas, Kentucky, Maine, Nevada, Ohio, or West Virginia your calls are especially important. But our goal is to have every Senator hear from an Alpha!

    1. Find your Senators
      • First, go to Select your state in the menu in the top right hand corner near the American flag.
      • You will get to a page with the phone numbers and website contact forms.
    2. Email or call your Senators and tell them that you and other Alphas need access to care. We need their support for:
      • No pre-existing conditions restrictions
      • No annual or lifetime caps on essential health benefits (EHBs)
      • A reasonable limit on out-of-pocket expenses
      • Insurance coverage up to age 26 on a parent’s plan
  1. I am a constituent and have (or my loved one has) Alpha-1 antitrypsin deficiency.
  2. The ACA’s patient protections are life-saving for Alphas and other individuals with pre-existing conditions. We must have access to specialists and therapies to lead healthy, productive lives.
  3. We oppose BCRA since it would jeopardize access to care and access to insurance for Alphas.
  4. The Cruz Amendment would harm me and other people with pre-existing conditions, by making it harder for us to access coverage, and making it more expensive to buy a plan that covers what we need.
  5. The bill would let states define essential health benefits, which will lead to lifetime and annual limits returning. These limits mean that Alphas and others with expensive, chronic conditions will lose coverage.
  6. The bill would increase premiums and out-of-pocket expenses for all Americans, especially those with expensive conditions, and those with lower incomes, while enabling plans to cover less of the services they need.
  7. Please vote no on BCRA!

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


Fiscal Year 2018 Labor, Health and Human Services, and Education Appropriations Alert!

This week, the House Appropriations Committee will consider the Departments of Labor, Health and Human Services and Education appropriations bill (the Labor-HHS bill) that sets funding levels for the National Institutes of Health (NIH) and many other public health agencies that are important to Alphas.

Please call your representative today and ask him or her to support a $2 billion increase for NIH. Here are some talking points for you to use:

  • We are glad that the House Labor-HHS bill approved by the subcommittee includes a $1.1 billion increase, rejecting the Trump administration’s proposed of 21% or $7.2 billion for fiscal year 2018.
  • However, more funding for NIH is needed to support the research being done to better understand and potentially cure Alpha–1 Antitrypsin Deficiency.
  • We join with others in the research community in requesting a funding level of $36.1 billion for NIH, a $2 billion increase over the 2017 funding level. This funding level is necessary to ensure that NIH can continue its work to develop better treatments and cures that benefit all Americans.
  • A larger increase for NIH will allow its Institutes and Centers to fund more investigator-initiated research, which is critical for advances in Alpha–1 and other rare diseases.
  • As the FY 2018 funding process begins, please support a $2 billion increase for NIH.

Here are key Representatives from key states to contact before Wednesday’s markup, since they serve on the House Appropriations Committee that will be drafting the funding bill:

Find your state representative:plus

  • Alabama: Robert Aderholt, Martha Roby
  • Arkansas: Steve Womack
  • California: Peter Aguilar, Ken Calvert, Barbara Lee, Lucille Roybal-Allard, David Valadao
  • Connecticut: Rosa DeLauro
  • Florida: Mario Diaz-Balart, Tom Rooney, Debbie Wasserman Schultz
  • Georgia: Sanford Bishop, Tom Graves
  • Idaho: Mike Simpson
  • Iowa: David Young
  • Illinois: Mike Quigley
  • Indiana: Peter Visclosky,
  • Kansas: Kevin Yoder
  • Kentucky: Hal Rogers
  • Massachusetts: Katherine Clark
  • Maryland: Any Harris, C.A. Dutch Ruppersberger
  • Maine: Chellie Pingree
  • Michigan: John Moolenaar
  • Minnesota: Betty McCollum
  • Mississippi: Steven Palazzo
  • North Carolina: David Price
  • Nebraska: Jeff Fortenberry
  • Nevada: Mark Amodei
  • New Jersey: Rodney Frelinghuysen
  • New York: Nita M. Lowey, Grace Meng, José E. Serrano
  • Ohio: David Joyce, Marcy Kaptur, Tim Ryan
  • Oklahoma: Tom Cole
  • Pennsylvania: Matt Cartwright, Charlie Dent
  • Tennessee: Chuck Fleischmann
  • Texas: John Carter, Henry Cuellar, John Culberson, Kay Granger
  • Utah: Chris Stewart
  • Virginia: Scott Taylor
  • Washington: Jaime Herrera Beutler, Derek Kilmer, Dan Newhouse
  • West Virginia: Evan H. Jenkins
  • Wisconsin: Mark Pocan

Attend Town Hall Meetings

Be there to let your Congress person know your concerns – Tell Your Story.

Congress is in recess until early next week. During this period, many members of Congress will hold in-state Town Hall meetings open to the public. Check out to find out when/where your members are holding Town Hall meetings and attend! Be there – Tell Your Story!

Questions and Talking Points :plus

  • If they will oppose the Trump administration’s proposed 19% cut to National Institutes of Health (NIH) in 2018 and instead support an additional $2 billion for NIH in FY 2018.
  • If they will support affordable health insurance coverage for all Americans, including those with pre-existing conditions such as asthma and COPD, and oppose the House-passed American Health Care Act.

Talking Points about NIH:

  • The Trump administration is proposing to cut NIH funding by 21% or $7.2 billion for fiscal year 2018.
  • A 21% funding cut would have a devastating effect on scientific research in the US, resulting in a loss of over 1,900 research grants.
  • A cut of this magnitude would also cause thousands of job losses at universities and academic medical centers.
  • Funding cuts to NIH will delay research breakthroughs that translate to advances for millions of Americans with chronic diseases.
  • The research community’s funding recommendation for NIH in FY 2018 is $36.1 billion which is a $2 billion increase over the 2017 funding level.

Talking Points about Healthcare:

  • I urge you to ensure that any health reform bill provides affordable health insurance coverage for all Americans, including those with pre-existing conditions.
  • According to the Congressional Budget Office, the House-passed American Health Care Act (AHCA) would cause 23 million Americans to lose health insurance coverage within 10 years, including 14 million within the first year.
  • The House AHCA’s state waiver of community rating rules would gut protections for people with pre-existing conditions including Alpha-1 and other related conditions including asthma and COPD and permit insurance companies to charge them much higher premiums.
  • Waiver of the ACA’s essential health benefits would eliminate the guarantee that insurance cover hospitalization, prescription drug coverage, chronic disease management and other essential health services and undercut the elimination of lifetime and annual caps.
  • The AHCA would cut an estimated $830 billion from Medicaid over 10 years.

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 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


Tell Your Congressman You Oppose HR 1313

The Alpha-1 Foundation joined 67 other patient health organizations in a letter to Congress, in opposition of HR 1313 the Preserving Employee Wellness Programs Act.

As we stated in our joint letter: "We strongly oppose any legislation that would allow employers to inquire about employees’ private genetic information or medical information unrelated to their ability to do their jobs, and to impose draconian penalties on employees who choose to keep that information private." Read the full letter.

The Alpha-1 Foundation has a long history of support for patient protections, most notably in the passing of the Genetic Information Nondiscrimination Act (GINA) in 2008. Read more about the Foundation's success here.

We still need your voice to make the difference!

Contact your Congressman today.


Protect out-of-pocket cost limit

The U.S. Congress is likely to take action in the coming weeks to repeal and replace the Patient Protection and Affordable Care Act (ACA).

One of the law’s patient protections that may be taken away is a cap on the out-of-pocket costs (such as deductibles and copays) that insurance companies can charge people.

This is often referred to as a maximum out-of-pocket limit. In 2017, the limit is $7,150 for an individual and $14,300 for a family.

The Alpha–1 Foundation is joining other patient advocacy organizations in rallying patients to call or write their members of Congress, demanding that this important protection be maintained or strengthened.

The Foundation is continuing to monitor the efforts to repeal and replace the Affordable Care Act. The Foundation remains strongly committed to ensuring that Alphas have access to the therapy and care they need.

The Foundation is well positioned for the effort. Armed with the trifecta of the Public Policy Working Group (PPWG), its policy partners at the government relations firm CRD Associates, and its grassroots advocates in the Alpha–1 community, the Foundation is working to retain the patient protections that are important for the continued care of Alphas.

The Foundation will update the community as the policies develop. As it continues to monitor the situation, the Foundation is asking the Alpha–1 community to share how the Affordable Care Act has helped or harmed Alphas and their families. The Foundation will use the information as part of its advocacy efforts.

Submit your responses to

How to Take Action:plus

Call or write your Senators and Representatives: • To find your Senators: • To find your Representative:

Here is a template message that you can use to address your member of Congress:

Dear (Add the Congress member’s name),

As someone living with Alpha–1 Antitrypsin Deficiency, a genetic condition that can cause lung and/or liver disease, I urge you to make sure that Congress continues the cap on out-of-pocket costs included in the Affordable Care Act. This protection helps many people avoid being bankrupted by the cost of their health care.

(Include your personal story about living with your condition and how capping your out-of-pocket costs helps you afford your care).

As Congress decides how to change the ACA, please ensure that the maximum out-of-pocket limit continues.

Thank you.


How has the Affordable Care Act affected YOU? - Share Your Story

Congress has been sworn in and one of the first items on their agenda is repealing the Affordable Care Act (ACA). This action will affect millions of Americans, including many with Alpha-1 Antitrypsin Deficiency.

Congressional Republicans have already taken the first steps towards repealing the ACA, but it is still unclear exactly how they intend to replace it. The Alpha-1 community has always been very active in grassroots advocacy efforts to protect access to care. Now is not the time for silence. Your stories need to be heard. We want to better understand the ways in which the ACA has helped or harmed you and your family. Note that the Alpha-1 Foundation will be using this information as part of its advocacy efforts.

Please share your story by answering the following questions and sending your responses to

  • Include your Name, Email Address and State.
  • What, if any, challenges did you or your loved ones have securing adequate health insurance prior to the passage of the ACA?
  • How the ACA impacted your or your loved one’s access to health insurance coverage and health care?
  • How would you or your loved one be impacted if the ACA were repealed?
  • What type of health insurance do you have (employer-sponsored, Medicare, Medicaid, individual market, Marketplace plan)?
  • Are you willing to share your story publicly?


The Alpha-1 Foundation is closely monitoring the status of ACA repeal and replace actions in Washington and will update our community as the policies develop. Please contact Karen Erickson, Associate Executive Director of Community Engagement, at with any questions.