Hepatitis C-positive? Doesn't mean you can't be organ donor, doctor says
New drug treatments offer patients flexibility when looking for viable organs
ORLANDO, Fla. – In the U.S., there are an estimated 115,000 people currently on the waiting list for a lifesaving organ transplant.
According to the American Transplant Foundation, a new name is added to the national transplant waiting list every 10 minutes. ATF also says a deceased donor can save up to eight lives, transplanting kidneys, lungs, a liver, a heart, a small intestine and a pancreas.
But what happens if the donor has a disease, like hepatitis C?
Years ago, doctors would immediately dismiss an infected donor, but to meet a growing need, advances in medicine have turned once-rejected organs into a viable alternative.
“People can become donors if they're hepatitis C-positive,” said Ginny McBride, the executive director of Our Legacy, a nonprofit dedicated to saving lives through organ and tissue donations. “If they've had hepatitis C in the past, if they have hypertension or diabetes or coronary artery disease, all of these things are conditions that we evaluate for each and every donor and then we work to identify the right recipient who can receive that organ safely and have it return them to being productive members of society.”
In News 6's continuing Q&A series, morning anchor and health reporter Kirstin O’Connor sat down with McBride to learn more about how hepatitis C infected organs can now save lives.
Continue reading below for edited excerpts from the interview.
WKMG: For people who have hepatitis C, why is it important that they know they can still be an organ donor?
McBride: The number of people who are waiting on the organ transplant list in the United States now exceeds 115,000 people. In 2018, 10,000 people died and became organ donors in the United States. The difference between the number of people waiting and the number of people who can donate organs after their death is great. Don't screen yourself out. Organ donation criteria changes all the time. The need is great, so transplant physicians and surgeons are continually figuring out ways to use different kinds of organs and put them into the recipients who will do best after transplantation using that particular organ.
WKMG: What changed and made it possible for people with hep C to become donors?
McBride: There was a time not terribly long ago when organs from hepatitis C-positive donors, and I'll call them HCV-positive donors, were not being utilized frequently in the United States. And then around 2014, drugs that could treat hepatitis C called antivirals became. Shortly after that, transplant physicians and surgeons began to realize that people who die and became organ donors, who also tested positive for hepatitis C, could donate their organs, and those organs could be transplanted into people, into recipients who were also HCV-positive but additionally into people who are not HCV positive. Those people, after transplant, would then be treated with the antivirals that have been produced in this country, and that made transplantation safer for them.
WKMG: And this is something that is obviously not the first item on the list. It's something that as someone who needs a donation would look through and understand the risk, and then make that decision before they're even offered one of these organs?
McBride: The U.S. Centers for Disease Control and Prevention worked with the organ donation community back in 2013 to identify donors who could be at increased risk of transmitting a disease between a donor and a recipient. And one of those categories of possible increased risk were donors who tested HCV positive. In order for us to safely and transparently transplant those organs, people coming onto the waiting list are being given the option of whether or not they want to accept an organ from someone who's HCV positive. These candidates in end-stage organ failure can either choose to say yes or no at the time they're listed for a transplant. When an organ offer comes to them, they can still choose to say yes or no and either affirm their original decision or say, 'You know, I've changed my mind. I think I'm going to wait for a little while.' Those are the decisions the candidates get to make themselves, in collaboration with the guidance of their transplant team.
WKMG: Why is something like this, as an education point, so important for our legacy?
McBride: Our success depends on our partnership with Central Floridians more than anything else. We hope that Central Floridians will trust us enough to be able to say yes to donation and join the donor registry. For many people in Central Florida with end-stage organ failure who perhaps are on dialysis or whose livers or hearts or lungs are failing, there is only one option for them to save and extend their lives and to become again productive members of society, and that means receiving an organ transplant. It's our hope that if people are in a position to say yes to donate regardless of their own medical condition, we hope they will.
WKMG: Is this changing some people who need organ donation -- is it changing their number on the waitlist significantly?
McBride: I think the way to best understand the impact that organs from HCV donors can have is that, although our experience is not very long, it is reasonable to expect that people will have shorter waiting times for a transplant if they choose to receive an organ from someone who is hepatitis C positive.
WKMG: What would their life look like after receiving an organ and then potentially getting sick from hepatitis C?
McBride: The impact of receiving an organ from any donor means that your life will be extended. You will come off of dialysis and it's been shown over and over in the last 10 years that being on dialysis can actually shorten your life. Receiving a kidney transplant is indeed lifesaving. What will happen differently for people who receive an organ from a hepatitis C-positive donor, is that there will just be another temporary medication regimen that they will have to engage in so that their physicians can make sure that any virus that may have been in the donated organ will not activate in a transplant recipient.
WKMG: Can you speak to, in years past, when you've seen an influx of donors and what that means for the health of the community?
McBride: The impact is profound. I've heard that the use of organs from hepatitis C-positive donors is one of the most important increases in organ availability over the last 10 years. It's fair to say that had we not started to more frequently utilize organs from HCV-positive donors, that we would have about 25 percent fewer donors here in Central Florida. That means that for every donor -- every donation that doesn't happen -- that means that three or four organs from each donor can't be transplanted. Eventually, that translates into hundreds of organs not being transplanted in Central Florida, and that means that hundreds of lives don't get saved.
WKMG: Some people may have a little bit of a fear or phobia of becoming an organ donor because of myths that are out there. What would you say to that?
McBride: Anyone can register to be a donor and everyone who registers should feel safe registering. The reason they should feel safe is that when you are perhaps injured and you come to an emergency room, the doctors and nurses in that emergency room don't know that you're in the registry. They have no way of checking. And more importantly, they don't care if you're in the registry. People in emergency rooms and ICUs, doctors and nurses, are dedicated, passionate people. They want to save your life. That's why they do their jobs. And it's only after they know that all the work that they've done hasn't been successful and they've communicated that to your families, that's when they notify us. And we're the only ones who can access the registry, and we don't give that information to the hospital until it is necessary for them to receive it.
WKMG: Is there anything else you'd like to include (or) tell us?
McBride: In Central Florida, about 50 percent of our population has joined the donor registry. You join the donor registry by either signing up when you get or renew a driver's license, or you can go to DonateLifeFlorida.org and sign up anytime you want -- 24 hours a day, seven days a week, you can choose to be a donor. If you die, we are able to go to your family and show them the evidence of your registration and say to your family that you chose to be a donor hero. You chose that the last act on Earth would be one of grace and generosity, and that it is our job to help make that happen for you.
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