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Healthcare bill is going to a vote - The time is NOW – Protect our access

Senate Republicans are crafting a legislative alternative to the House-passed American Health Care Act (AHCA) to repeal and the Affordable Care Act (ACA). They have been working on their legislation in secret and do not plan to release their bill to the public until days before a planned vote on June 28. While details about what is included in the Senate bill are scarce, we anticipate that, like the AHCA, it will impact patient protections and potentially lead to significant losses in coverage. Contact your Senators today and urge them to oppose any legislation that undermines the ACA’s patient protections, many of which have benefited Alphas.

We have to push to block the votes required to pass the bill in the Senate.

What you can do TODAYplus

  1. Find your Member of Congress:
    • First, go to www.senate.gov in your web browser.
    • Go to the “Find Your Senators” tab, which is located on the upper left side of the home page.
    • You can then choose your state, which will list your two Senators and take you to their websites, which contains their phone number and a constituent contact form.
  2. Let them know that you and other alphas need access and request:
    • No pre-existing condition restrictions
    • No annual or lifetime caps
    • A reasonable limit on out of pocket expense
    • Insurance coverage up to age 26 on a parents’ plan

Crucial Targets - Particular states and senators

Keep the pressure on and educate your governor if you live in.

Specific State Targets:

  1. Alaska – Gov. Bill Walker (I) - ph. 907-465-3500, fax. 907-465-3532, Twitter: @akgovebillwalker
  2. South Carolina – Gov. Henry McMaster (R) – ph. 803-734-2100, fax. 803-734-5167
  3. Iowa – Gov. Terry E. Branstad (R) – ph. 515-281-5211, fax. 515-281-6611, Twitter @terrybranstad
  4. Arkansas – Gov. Asa Hutchinson (R) – ph. 501-682-2345, fax. 501-682-1382, Twitter: @asahutchinson

Specific senators to target:   Dean Heller (R-NV), Mitch McConnell (R-KY), Bill Cassidy (R-LA), Susan Collins (R-ME) and Lisa Murkowski (R-AK) should be educated and know that alpha-1 patients need access to affordable care.

  1. Dean Heller (R-NV) - ph. 202-224-6244, fax. 202-228-6753, Twitter: @SenDeanHeller email
  2. Mitch McConnell (R-KY) – ph. 202-224-2541, fax. 224-2499, Twitter: @mcconnellpress email
  3. Bill Cassidy (R-LA) – ph. 202-224-5824, fax. 224-9735, Twitter: email
  4. Susan Collins (R-ME) – ph. 202-224-2522, fax. 224-2699, Twitter: @senatorcollins, email
  5. Lisa Murkowski (R-AK) – ph. 202-224-6665, fax. 224-5301, Twitter: @lisamurkowski, email

What to say to your Senator plus

When you call or email your Senators, please include the following:

  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. Share how these protections have impacted your or your loved one’s life
  4. We are extremely concerned about the House bill’s provision to allow states to waive the ACA’s essential health benefits (EHB) requirement since this would lead to less comprehensive coverage and lifetime and annual limits could return. I urge you not to support a Senate version with this provision.
  5. I am also very concerned about the policy that would let states waive rules to allow plans to set premiums based on health status. This would make coverage unaffordable for Alphas.
  6. I urge you to ensure that any health reform bill passed by the Senate provides access to affordable health insurance coverage for all Americans, including Alphas and those with other pre-existing conditions.

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.

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 townhallproject.com to find out when/where your members are holding Town Hall meetings and attend!

Attend Town Hall meetings for your members of Congress and ask them:

  • 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.

Be there – Tell Your Story!

 

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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.

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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.

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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 awareness@alpha1.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.

Thank you.

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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 awareness@alpha1.org.

  • 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 kerickson@alpha1.org with any questions.

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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: 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.

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]