2021 CLA Research Grant Awarded to Dr. Hamza Yazdani

Dr. Hamza Yazdani 2021 CLA Research Grant Recipient

Yazdani

On behalf of the Community Liver Alliance and its Board of Directors, we are pleased to announce the winner of the 5th Annual Community Liver Alliance Research Grant is Hamza Yazdani, MD from the University of Pittsburgh Dept of Surgery for his research proposal “Exercise Preconditions the Liver against Ischemia/Reperfusion Injury”.

 Research is an important part of the Community Liver Alliance mission and we are proud to be able to invest in scientists and their research projects.  Our hope though this investment is to continue to inspire new therapies, treatments, and cures for liver diseases.

Questions about the CLA Research Grant Program? Contact us at (412) 501-3CLA (3252) or contact Amy Logston at amy@communityliveralliance.org.

CLA Proud to Announce Learning Labs Program

CLA Proud to Announce Learning Labs Program

FeedbackThe Community Liver Alliance is excited to announce our newest program, CLA Learning Labs!

Launching in February 2022, this year-long program aims to provide organizations with essential skills and build capacity to carry out their mission and expand harm reduction services to people who use drugs. The program connects each HepConnect grantee with a mentor, and will be taught by experts in the following core competencies:

  • Communication
  • Leadership
  • Business Basics
  • Building Relationships
  • Personal Branding

Our format will also encourage racial equity and justice by promoting meaningful interactions within diverse audiences. Our experiences throughout the program will include a variety of virtual experiences, travel, service learning, shadowing, on-site visits, and social activities.

Stay tuned to learn about our participating organizations and more!

Questions? Contact us at (412) 501-3CLA (3252) or contact Amy Logston at amy@communityliveralliance.org.

Ask Congress to Support the LIVER Act

Ask Congress to Support the Liver Illness Visibility, Education, and Research (LIVER) Act

What is the Liver Illness Visibility, Education, and Research (LIVER) Act?
The LIVER Act is a public health initiative that will help people of all ages, lifestyles, and ethnic backgrounds reduce their risk for liver cancer and related risk factors like viral hepatitis and NASH.

Who is the LIVER Act important for?
All liver disease can progress to liver cancer; it is estimated that 44% of individuals with chronic hepatitis B infection, 21% of individuals with hepatitis C, 4-27% of individuals with NASH, and 26% of individuals with alcohol-related cirrhosis will develop liver cancer.

Certain communities are disproportionately impacted by liver cancer; Asian Americans are four times more likely to have liver cancer; excess liver cancer incidence and liver cancer mortality are highest among non-Hispanic Black males; U.S. Hispanics have a liver cancer incidence rate that is almost two times higher than non-Hispanic whites; Asian Americans comprise 60% of the U.S. population living with Hepatitis B, the leading risk factor for liver cancer; American Indian/Alaskan Natives have a liver cancer mortality rate almost two times higher than non-Hispanic whites.

Why do we need the LIVER Act?
Since 1980, the incidence of liver cancer in the United States has nearly tripled, with death rates having more than doubled.

We know that up to 70% of liver cancer cases could be prevented by increased uptake of hepatitis B vaccination, hepatitis C cures, and lifestyle management and development of treatments for fatty liver disease.

How will the LIVER Act address this issue?
The LIVER Act will authorize additional funds and better coordinate interagency liver cancer, hepatitis B research at the National Institutes of Health (NIH).

It will elevate liver initiatives within the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

It will authorize funds for prevention and awareness grants at the Centers for Disease Control and Prevention, including grants for screening, vaccination, and treatment for liver cancer, hepatitis B, hepatitis C, nonalcoholic fatty liver disease, nonalcoholic steatohepatitis, and cirrhosis of the liver.

Don’t miss this opportunity to show the groundswell of support for the LIVER Act across the country and urge your legislators to take action. 

 

Suzanna Masartis Speaks Out for Hep C

Testimony of Suzanna Masartis

Executive Director, Community Liver Alliance

Joint Informational Meeting of the Pennsylvania House Health and Insurance Committees
Monday, April 20, 2015

My name is Suzanna Masartis and I am executive director of the Community Liver Alliance. We’re a nonprofit that supports patients with liver disease and their caregivers. We serve as a resource for local health care professionals and we also advocate and educate government officials on liver disease issues and the need for continued research and access to treatment.

As you may be aware, the country is in the midst of a hepatitis C epidemic. The Centers for Disease Control and Prevention estimates that 3.2 million people have a chronic hepatitis C virus infection. In Pennsylvania alone, estimates range from 125,000 to 160,000 people. The scary part is that most people don’t know they’re infected because they don’t look or feel sick. But 75 percent to 85 percent of people who have the virus will develop a chronic infection.

You can live with this infection in your body for decades without feeling sick and all the while the virus is silently damaging your liver. Over time, chronic hepatitis C can cause serious health problems including liver damage, cirrhosis, liver cancer and even death. In fact, hepatitis C is a leading cause of liver cancer and the Number One cause of liver transplants. This can be a devastating and expensive disease.

The CDC has actually recommended that all baby boomers – people born from 1945 through 1965 – get a simple blood test to see if they have the virus. Boomers – that’s many of us in this very room – are five times more likely than other adults to carry the hepatitis C virus. Three out of every four people currently infected with hepatitis C were born during this time period.

The good news is that breakthroughs in the pharmaceutical world have provided a cure for this disease. Until a few years ago, there were only two effective drugs available for treatment. However, their side effects — including pain, fever, nausea, depression, insomnia — were often just intolerable and ruined a person’s quality of life.

Considering that treatment could last up to 48 weeks, many sufferers found it worse than the disease – especially since the treatments only offered a cure rate as low as 40 percent. Working with victims of liver disease — particularly those hit with a diagnosis of hepatitis C infection — can be a wrenching experience. As you can see from the statistics, it is typically people like you and me, carrying on a normal life, who find out they are infected because they had blood work done for something else. To find out you have harbored a silent enemy all these years and then to learn that the treatment would likely make you sick and then to learn that, here in the prime of your health, you may need to prepare for a liver transplant, is all profoundly life
changing, to say the least.

Given these circumstances, the pharmaceutical industry has worked tirelessly to develop better weapons against hepatitis C. At last, thanks to their research and development efforts, we now have serious game changers for the millions of chronic hepatitis C sufferers. The first on the scene in 2013 — a drug called Solvadi made by Gilead — was the first-ever promise of a fast cure for hepatitis C and with fewer side effects, which allowed some patients to forgo injection medication. They did not have to put their lives on hold for lengthy, unpleasant drug treatments or hope for a liver transplant and plan for a lifetime of medical costs.

Treatments for hepatitis C really are on the cutting edge of science. Shortly after Solvadi entered the market, another Gilead breakthrough treatment was approved, Harvoni. And just this past December, the FDA approved Abbvie’s Viekira Pak. All of these drugs offer a nearly 95% or better cure rate with more tolerable side effects – and there are even more drug developments in the pipeline.

Clearly, the biopharmaceutical industry is changing lives and saving lives. The miracles of
science are real.

With the advent of the Affordable Care Act, and its ban against health insurers denying coverage to patients with chronic and pre-existing conditions, millions of those suffering from Hepatitis C and the long list of chronic diseases that can be treated and often cured through breakthrough biopharmaceuticals have access to that care. In Pennsylvania alone, the ACA has unlocked the gate for 300,000 residents to gain health insurance and access to necessary health care.

But there’s always a rub. The coverage offered by these plans is still unaffordable for many, and often the plans lack  transparency. It’s hard to determine what the plans cover and what out-of-pocket and drug copayment costs will be. Consumers in the plans are typically subject to higher deductibles and pay a higher proportion of their medication costs once they meet deductibles.

It is not uncommon to find insurers placing all drugs for certain diseases in a tier with the highest cost-sharing. To people with chronic medical conditions — the ones who can most benefit from health care interventions and breakthroughs in the drug industry — it seems the plans are designed to discriminate against them for having their condition.

So what happens? When chronically ill people are priced out of receiving medical care, they are forced to make health care decisions based on whether they can afford a copayment for a drug that offers the only hope for a cure.

Some patients begin a treatment regimen only to suspend it when they run out of money. Particularly with chronic diseases, treatment adherence is necessary for success.

Suffering without any treatment, stopping when you’re broke, or only taking half a dose of medicine to stretch out your prescription puts these patients back at square one, leads to preventable complications and ultimately, adds to our long-term, overall health care costs.

In fact, ExpressScripts says that non-adherence — patients not taking their prescription drugs
properly — is the nation’s costliest healthcare problem. The U.S. wastes more than $300 billion each year treating unnecessary medical complications that could have been avoided if patients had taken their medications as prescribed.

That cost is even more frustrating when you consider how much time, effort, and money it takes to even get a drug to the market.

According to the Tufts Center for the Study of Drug Development, it costs the industry more than $2.58 billion to gain a new prescription drug approval, including failures and capital costs. And in some cases, the development and approval process can take up to a decade.

Still, retail prescription medicines have consistently accounted for just 10 percent of U.S. health care spending, a figure projected to remain stable. To give this some context, private insurers spent more on non-medical administrative costs in 2013 than on prescription drugs. The U.S. will spend three times as much on hospital care as on prescription medicines over the next decade.

If you weigh the price of drug treatment just for the millions of Americans plagued with Hep C against the price of the alternative — long-term care expenses for a chronic condition or perhaps liver transplant surgery and a lifetime of drugs to sustain the organ — prescription medications are a value-added proposition and cost effective in the long run.

To put this in perspective, Hep C is responsible for more than $34 billion in annual medical costs; a burden that is projected to grow as the affected population ages. And while there is an upfront
cost of for these new, innovative treatments, it is easy to see how these cures provide
tremendous cost savings for the entire health care system. Access to affordable life changing prescription medication is not just an issue in the liver disease community.

Our country is growing older and less healthy. According to the CDC, as of 2012, about half of all adults in the U.S. have one or more chronic health conditions. One of four adults has two or more.

Given that 84 percent of all health care spending is for the 50 percent of the population who have multiple chronic conditions, it should be no surprise that two-thirds of those patients do not adhere to their prescription medicines. We need to do a better job of enabling patients to stick to their treatment plans.

In the end, patients need clear information on all of the costs they will face if they enroll in a particular plan, including the specifics of prescription drug coverage. And, the plans should not be able to engage in de facto discrimination against patients with chronic illnesses.

The pharmaceutical industry doesn’t have the answers for every illness, but is trying to uncover as many as it can. Innovative medicines have significantly improved the quality and length of life over the last several decades. In the long run, that saves money for the healthcare industry and the consumer and accounts for only a small fraction of overall health spending.

We are experiencing the amazing benefits of those discoveries in the world of liver disease. The hepatitis C drug journey is just one success story. We should all be doing all we can to replicate these successes for other diseases and ensure the chronically ill are able to access the resulting
medications.

And, one final note: May is Hepatitis Awareness Month in the United States, and May 19th is Hepatitis Testing Day. Please consider being tested for hepatitis C.

Thank you.

Medicare Cuts Worrisome

Letter to the Editor: Medicare Cuts Worrisome

Trib Live

Medicare Man

September 2021

As I work with Medicare seniors in Pennsylvania, I am concerned about prospective cuts to clinical lab services.

In January 2022, the U.S. Department of Health and Human Services is scheduled to cut rates for nearly 600 tests, including the top 25 most used by seniors — threatening access to testing and making it more challenging for seniors to manage their health.

Amid a global pandemic, ensuring all patients maintain access to diagnostic care must be a top priority, especially as the CDC finds that nearly 4 in 10 adults reported avoiding or delaying medical care because of covid-19 related concerns.

Worse, these cuts hit the most vulnerable in our community. These lab tests are critical for any senior managing liver disease, cancer, diabetes or other illness.

It’s time for Congress to take action against the harmful Medicare lab cuts facing seniors in the Pittsburgh region and across the state. Seniors were made a promise that their Medicare benefits would be there, and it’s time for policymakers to protect that care now and in the future.

Suzanna Masartis

 

Improving Seniors Timely Access to Care

Improving Seniors Timely Access to Care

H.R. 3107, Care Act of 2019

SeniorsCLA cosponsored legislation that streamlined and standardized the Prior Authorization (PA) process under Medicare Advantage (MA).

PA is a tool used by insurers to reduce spending from improper payments and unnecessary care by requiring physicians and other health care professionals to get pre-approval for medical services. But it’s not without fault. The current system of unconfirmed faxes of a patient’s medical information or phone calls by clinicians takes precious time away from delivering quality and timely care. PA continues to be the #1 administrative burden identified by providers groups and nearly four out of five MA enrollees are subject to unnecessary delays. In 2018, HHS’ Office of the Inspector General raised concerns after an audit revealed that MA plans overturned 75% of requests that were originally denied.

Health plans and providers agree that the process can be improved and agreed on principles in a consensus statement. Building on these principles, H.R. 3107 would streamline approvals by moving PA to an electronic process as well as identify items and services that are routinely approved – initially and on appeal – and adopt real-time decision making. Cost saving tools like PA are antiquated compared to innovative models like value-based arrangements (VBA). Until VBA can be widely adopted – provided there are changes in statute – stakeholders and the Trump administration agree to improve these cost saving tools and put patients over paperwork.

H.R. 3107 is supported by 400 organizations representing patients, providers, IT groups, and companies across the country. The Small Business Committee held a hearing on how PA negatively impacts small practice groups and submitted a letter to Ways and Means leadership in support of the bill.

See all 280 Cosponsors of this Bill