Congress Hears This Liver Patient’s Voice

May 20, 2020

It is shocking that in 2018 people get on television or Facebook and share details about the most personal things in their lives—sex, money or addiction—but liver disease is still stigmatized.  Every day, I try to show the world that I am the face of liver disease: a mom with three kids.

My name is Carolyn Evans and I was diagnosed with Primary Biliary Cholangitis (PBC) in 1992. As a young mother with two small children, this news was devastating.  I had my third child in 1994, two years after the diagnosis.  Then in 2006, I had a living donor liver transplant.

As those with PBC know, this condition can be extremely challenging. The bills and battles with insurance companies, along with the scarcity of information on the disease, make it that much harder.

That is why I became a patient advocate, and a volunteer for the American Liver Foundation, including participating in their annual Advocacy Day in Washington, DC.

I learned four critical things about liver disease on Capitol Hill.

We need to stand with all people who have a liver disease.

I know many people with PBC who tell others they have an autoimmune disease, but do not disclose that PBC is also a liver disease.  I can empathize. Nobody wants the judgments that often follow when you say you have a liver condition.

But here is the truth. Although our liver issues are unique, we face similar challenges with regard to health insurance concerns, access to treatment, and the stigma of liver disease.

Right now, in 41 states when individuals turn to a charity for assistance in paying insurance premiums or copays, their insurance company may have the right to cancel the policy.  It doesn’t matter that the insurance company receives the full amount owed to them.

This practice impacts people with PBC, nonalcoholic steatohepatitis, liver cancer and hundreds of other chronic and acute conditions.

That’s why I, and the American Liver Foundation, have been encouraging people to reach out to their Congress Members to ask them to sign on to H.R. 3976, known as the Access to Marketplace Insurance Act.

The bill has bipartisan support and would protect people from losing their insurance.  It isn’t a partisan issue.  It’s a human issue.  You can learn more about the bill – and how you can stand with millions of others living with a liver disease – by going to ALF’s Advocacy Center.

If we don’t tell our stories, our voices go unheard

You may be thinking about visiting the advocacy link above when you have a free moment.  But, if you are like me, chances are you will never have free time.  When we are busy balancing work and family, it can be easy to forget that politics and public policies really do impact our lives.

But here is my second truth.  Those of us with a serious chronic condition have an important story to tell.

My own story is about both the need for increased federal funding for liver disease research and organ donation.  The chance of my getting a liver from a deceased individual was never going to happen because I live in an area that lacks enough donations to cover the need.

I try to make this point in every legislative meeting. If my sister-in-law hadn’t been willing to donate a part of her liver, I might have died on the transplant waiting list.

Most of the time, legislators and their staff don’t even know it’s possible to donate part of your liver. That is not surprising. In 2017, of a record 8,082 liver transplants, only 367 (4.5%) were from living donors. Read more…

The good news is that our collective voices are being heard.  Just last week, the Organ Donation Clarification Act, a bipartisan bill to study and encourage organ donation, was introduced.

We can reduce the liver transplant waiting list

The Organ Donation Clarification Act seeks to address the serious and under-appreciated challenges that limit organ donation.  Another approach to reducing the liver transplant waiting list is to make certain that everyone with hepatitis C (HCV) gets tested, treated, and cured. Right now, HCV is the top reason people have liver transplants.

So here is my third truth. Even if you don’t have HCV, it’s important to speak up for increased HCV testing and treatment.  ALF is supporting HR 5922, a bill that seeks to test Vietnam era veterans for hepatitis C.  These veterans are among those at highest risk for the virus.

Soon nonalcoholic steatohepatitis (NASH), now called metabolic dysfunction associated steatohepatitis or MASH, a disease that begins with the accumulation of fat in the liver, will become the leading indicator for transplant.  We need greater public awareness of this disease.

Advocacy Works

Sometimes, it can feel like the average man or woman on the street can’t make a difference.  But thanks to patients across the United States, there are several policy advances that we have recently won:

  • In 2018, there was a $3 billion federal funding increase for National Institutes of Health (NIH) and a $1 billion increase for the Centers for Disease Control and Prevention (CDC), thanks to the efforts of ALF and other patient organizations. These increases will advance liver disease-related medical research and bolster hepatitis and other public health programs.
  • The Congressional recommendations for the coming fiscal year propose the CDC start a liver cancer awareness program.
  • We expect legislation to be passed by the end of the year that would authorize funding to address the intersection of infectious diseases and the opioid epidemic. Sadly, rates of new HCV infections have tripled due to opioid use. ALF worked with Congressmen Leonard Lance (R-NJ) and Joe Kennedy (D-MA) on this legislation.

The more I learn about advocacy and the many legislative issues impacting our lives, the more I want to help.  Surprisingly, it doesn’t take much to get to know your legislators and have them begin to see you as an expert on the needs of patients.

Last updated on January 18th, 2024 at 09:38 am

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