When 50 Patient Advocates Meet Congress: What Happened Next?

May 8, 2018 | Patient Blog

50 patient advocates from 22 states descended upon the nation’s capital recently conducting over 120 meetings in an effort to urge congress to protect patient assistance.

With organizing this annual one-day advocacy focused campaign, Patient Services Incorporated’s set objective was to urge Congressional members to sign on to the PSI main advocacy initiative, which is H.R. 3976: The Access to Marketplace Insurance Act.

What Is The Access To Marketplace Insurance Act?

A federal policy issued by the Centers for Medicare & Medicaid Services (CMS) is prohibiting charities from helping Americans pay their health insurance costs, keeping essential treatments and services out of reach for many of those most in-need.

Health plans in 42 states are denying coverage to patients with expensive – yet devastating – conditions from their plans, undermining the intent of the Affordable Care Act (ACA) and unraveling the safety net patient assistance groups have worked so hard to create.

Fortunately, members of Congress have an opportunity to take action. Bipartisan legislation, H.R. 3976: the Access to Marketplace Insurance Act, would secure non-profit premium and cost-sharing assistance for patients enrolled in qualified health plans.

A Sense Of Urgency Surrounds PSI Advocacy Day 2018

Meeting with dozens of Congressional offices on Capitol Hill, these 50 patient advocates were joined by PSI team members and supportive organizations to unite in Washington D.C. for one goal, to urge these members of congress to protect patient assistance.

The timing for this PSI Advocacy Day could not be more crucial as a sense of urgency surrounded this year’s efforts. Recently, the Congressional Budget Office predicted that the average premiums for benchmark plans under the Affordable Care Act (ACA) will spike by 34 percent in 2019 due to the loss of the ACA’s individual mandate and allowance for limited-benefit plans.

Furthermore, the Centers for Medicare and Medicaid Services have finalized regulations that will further weaken ACA standards for 2019, including those mandating essential health benefits and ensuring the availability of navigators that help consumers sign-up for ACA Marketplace coverage.

Patient Advocates Leaving Behind Lasting Impressions

One of the 50 patient advocates that joined us was Amee from Washington. When we asked Amee why she wanted to join us on the hill for Advocacy Day, she replied, “I advocate with PSI to raise awareness for chronic, some potentially life-threatening diseases, which are expensive to treat. I believe that all people should have access to healthcare and medications, despite ability to pay, and that organizations such as PSI should be allowed to assist with costs associated with these conditions. Patients should not be penalized for inability to afford medications and other expenses related to chronic illness, whether that be self-pay limitations, or because insurance co-pays and co-insurance and other cost-sharing ploys are astronomical and financially impossible.”

A personal highlight for Amee from Advocacy Day was in seeing the astonishment when she talked about the expense of just her medications on a monthly basis. The comments related to the realization that her monthly medications alone equate to a year’s salary in some cases were fascinating. Amee said It was great being able to have conversations with people who realize and come to understand that because of charitable assistance, she can avoid being reliant upon government assistance, and rather, be a functional person who works full time and provides for her family. Leaving people, she talked to with a message of “Let Charities Be Charitable” is one that she hopes resonates forever.

And this is just one of many stories from the patient advocates who traveled to the hill that day coming from 22 states. Another was Jennifer Collier, who was recently featured as an Advocate Spotlight on the Hearts for Homes website.

“My why is watching my father be in jeopardy of not receiving the medications he needs to save his life. Also, my job everyday as a nurse and transitional care manager allows me the privilege of helping patients everyday using what I have learned from finding help for my dad.”

You can read Jennifer’s spotlight here.

Advocacy Efforts Helped Gain Critical Support

As a result of PSI’s Advocacy Day, Congressional support for passage of H.R. 3976 climbed to 145 cosponsors. Prior to Advocacy Day there were 134 bipartisan cosponsors. Coincidentally, there are currently over 90 plans in 42 states that prohibit patient assistance. Together, we’re making progress. Together, there is much work yet to be done.

Advocacy Day Is Over, But Advocacy Continues

Building off the momentum created on Advocacy Day, you can help us gain more support as we marched our way (along with so many others) towards getting the votes needed to pass H.R. 3976.

To do this, we encourage patients, family, friends, caregivers, and anyone else interested in helping PSI’s advocacy mission to join our PSI Advocacy Ambassadors program. By becoming an Ambassador:

  • You’ll receive exclusive news and updates on how PSI is taking action
  • Unique opportunities to share your story and make your voice heard
  • Learn more about the health policies that affect you
  • Connect with other Ambassadors.

One can learn more about the program and sign up here. 

Read more PSI News

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