Protect Essential Health Benefits for Alphas
UPDATE 3/25/17 4:00 PM:
Thank you to the Alphas who called and wrote their Members of Congress to oppose the American Health Care Act. Your voices made the difference! Late this afternoon, the House leadership pulled the AHCA when it became clear that there weren’t enough votes for the legislation to pass. At this point, we believe that Republicans in Congress plan to abandon efforts to repeal the ACA and turn to other policy issues. The Alpha–1 Foundation will continue to monitor efforts by Congress and the Trump Administration to affect health insurance coverage and will continue our advocacy for access to care for all Alphas.
The House of Representatives will be voting this afternoon on the American Health Care Act (AHCA), the bill to repeal and replace the ACA.
Final changes released for the bill overnight include harmful essential health benefits (EHBs) language:
- The current, federal definition of EHBs is repealed and states would define them after 2018.
- This jeopardizes access to comprehensive plans and could make the elimination of lifetime and annual limits meaningless.
Call your Representatives THIS MORNING, 3/25/17 – focus on the Republican House offices in your state – and ask them to vote NO on the bill. Your voice matters!
Call the Capitol Switchboard: 202.224.3121 and ask to be connected with your Representative’s office. (Find your representative)
Here’s what to say:
- You are a member of the Alpha–1 community and you want to discuss the American Health Care Act/AHCA.
- We oppose the bill because it repeals the current ACA definition of essential health benefits (EHBs).
- EHBs ensure access to comprehensive coverage and several ACA policies only apply to services defined as EHBs. The EHB language could make the ban on lifetime caps and limit on out-of-pocket expenses meaningless. These policies are incredibly important to our community.
- Please vote NO on the bill. Our lives depend on it!
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:
- Find your Member of Congress:
- Sign up for your Member of Congress’ newsletter on their website
- “Like” your Member of Congress on Facebook so you can keep up to speed with their activities.
- 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.
- Find your Member of Congress:
- Find the contact form on their website.
- Paste the sample email below into the form. Be sure to personalize it!
- Let us know once you’ve sent the email by contacting Karen Erickson firstname.lastname@example.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.
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.
- 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.
- 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.
- If you plan to attend an event and have further questions, please contact Karen Erickson email@example.com 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.
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 firstname.lastname@example.org.
How to Take Action:plus
Call or write your Senators and Representatives: • To find your Senators: https://www.senate.gov/senators/contact/ • To find your Representative: http://www.house.gov/representatives/find/
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.
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 email@example.com.
- 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 firstname.lastname@example.org with any questions.
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
- 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 Email: Third Party Patient Assistance – Let Congress know you need insurance companies to accept third-party assitance
We have drafted below a sample email for you to use. 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.
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!