Monday, April 1, 2019

Hep C Patient Now is an Advocate Sofosbuvir Velpatasvir | Generic Epclusa

Carolyn Powers: A Hepatitis C Patient Becomes an Advocate Sofosbuvir Velpatasvir | Generic Epclusa
hep c treatment Carolyn Powers is a community activist dedicated to environmental issues. She is the single mother of two grown daughters, and has hepatitis C. Recently, Ms. Powers became an advocate for changing the regulations concerning medical coverage of living donor transplants in her home state of California. Sofosbuvir Velpatasvir | Generic EpclusaDue in great part to her efforts, Medi-Cal, California’s Medicaid program, is altering its policies regarding living donor transplants. As of December 2000, Medi-Cal will fund adult-to-adult living donor transplants.


Until the day of my esophageal bleed (bleeding of enlarged and ruptured veins in the esophagus) I was in fantastically good health. My only complaint was getting tired easily. The day before the bleed, I had been out on a four-and-a-half hour horseback ride with a National Geographic writer.

The next morning, I was dizzy. I felt like I was dying, so my roommate called 911. The doctors gave me a nasogastric tube (a tube that goes through the nose to the stomach) and I vomited two liters of blood. They were screaming to transfuse more blood. One doctor kept telling me not to worry, that I wasn’t going to die. But I didn’t understand. I felt like the calm at the center of a hurricane. I found out later that about 30 - 50% of people die during that first esophageal bleed.

In the next day or two, they found that I had hepatitis C and told me I would need a liver transplant or I’d continue to have bleeds and die. They said I had a cirrhotic liver. Like many people, I associated cirrhosis with drinking. I wasn’t in any of the risk groups so I’d never thought twice about getting tested for hepatitis C.

It was a very shocking process: the bleeding episode, the diagnosis. I was 54 years old and thought I’d be healthy into my 80’s or 90’s.

I had just finished working for State Senator Steve Peace and was working part time for former U.S. Congressman Brian Bilbray (R-CA). This was after my divorce, and I had no health insurance. There are no handbooks on what you do when you have a life-threatening disease and no health insurance.

A local county supervisor helped accelerate things and spelled out how I could get Medi-Cal. Medi-Cal rules don’t allow you to make more than $700 a month. If you make more, they pay less for your medical expenses; and the divorce left me owing money, not having it.

In the beginning, my daughters teamed up and took over. They made decisions about what information I was ready to hear -- what was ‘mommy safe.’ Teresa found ALF and the local San Diego Chapter. They answered her questions, sent newsletters, and told her about support groups.

That’s when I got hooked up with my UCSD Medical Center Liver Transplant team. The man who will likely be my surgeon talked about living donor transplants. My older daughter, Nadine, has my blood type and was willing to look into donating part of her liver. We explored the risk factors in adult-to-adult transplants. Some of the earlier surgeries had donor fatalities, but that was more than ten years ago. Only 300 or so adult-to-adult living donor transplants are done in the U.S. each year.

My surgery was scheduled. But then I got a notice that Medi-Cal did not approve my surgery. They would fund an adult-to-child transplant but not adult-to-adult because they were stuck on it being too risky to the donors, and perhaps unethical. It bothered me that Medi-Cal had not even taken a look at living donor transplants since 1996, and there have been so many breakthroughs since then. There are now 17,000 on the liver transplant waiting list; last year there were 14,000.

I was approved for a cadaver transplant. 20 - 30% of people die while waiting three-to-five years for a cadaver transplant in San Diego.

Unless the living donor option is available it will only get worse and worse. I want to make Medi-Cal accountable for their actions. Living donor transplants can lessen the competition for cadaver organs.

Since then I’ve been working with everyone, including U.S. Senator Dianne Feinstein’s chief of staff. When Senator Feinstein was the featured speaker at a luncheon, I was introduced to her and she hugged me and told me that her staff would be on this until the criteria are changed in California. She had received a tendon transplant; she understood.

Editor’s note: There are numerous other states that do not cover adult-to-adult liver transplants. Ms. Powers has committed herself to working with the ALF and speaking out on behalf of those patients who are denied this coverage.