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23 Aug 2018

At Risk for a Curable Disease: The Desert AIDS Project Wants Baby Boomers to Know: You May Have Hepatitis C—and Not Know It

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The Desert AIDS Project wants to let Coachella Valley residents know about the dangers of hepatitis C—especially baby boomers, who may have been carrying the now-curable disease unknowingly for decades.

Jose De La Cruz is a community health educator for DAP. He explained why people from one particular demographic—those born between 1945 and 1965—are especially at risk for the potentially fatal disease, which can cause liver failure and liver cancer.

“The test (for hepatitis C) didn’t really become available until 1991 or 1992,” De La Cruz said. “So you’re talking about anybody (being at risk) who received a blood transfusion before then. … You also have people who were going off to the Vietnam War; there were casualties, and universal precaution wasn’t even developed yet. There was the revolution of IV drug users during the 1960s. Before HIV came around, a lot of tattoo parlors didn’t have too many health departments going in to inspect them, (nor did) piercing parlors. There are a lot of factors that add to this, and because it takes such a long time for the symptoms to develop, because the liver can regenerate itself, you have people who could have been infected for 30 to 40 years, while no symptoms have developed yet.”

Hepatitis C can now be cured—but because of the high cost of these new drugs, some insurance companies are not willing to pay for them until serious liver damage has occurred.

“With hepatitis C, one of the things you want to be able to do is get yourself a good doctor, because a lot of the time, the insurance companies will make you wait until you’re at Stage 2 of liver damage,” De La Cruz said. “But you have some great doctors who will notice how much damage you have to your liver, and if you’re developing symptoms already. If you’re developing symptoms, that could be a reason to get you on treatment now instead of seeing how much damage of the liver you have.”

The cost per dose of these hepatitis C drugs is astronomical—potentially approaching $90,000 for a 12-week regimen—and the drugs are newly available to some lower-income Californians thanks to the state recently allocating $176 million for treatment.

“The medication is pretty expensive—it’s $1,050 per pill for Sovaldi—and the thing is … how many people can (an untreated person with hepatitis C) infect?” De La Cruz said. “Now you’re looking at even more infections. One person you allow to keep living with hepatitis C, not curing them—how many more people could this person infect, and how much more money is it going to cost? … It’s almost like HIV back in the ’80s, when the numbers started to multiply more and more due to a lack of education and lack of knowledge.”

There is another group De La Cruz and other health educators are trying to reach: people who know they have hepatitis C, but who have previously declined treatment due to questionable effectiveness and serious side effects.

“There are a lot of people who know they are infected and didn’t want to go through the treatment,” he said. “It’s because of not knowing that … doctors now have Sovaldi, and this medication can cure them. Many are under the assumption that it’s still interferon and ribavirin treatments, and there are horror stories they’ve heard about the interferon. It’s now my job to go out there and educate them, saying, ‘No, now there is a cure; you don’t have to live with hepatitis C anymore. Now, you don’t have to go through the regimen (lasting) six months to a year. Now, it’s just eight to 12 weeks and not just clearing 35 to 40 percent (effectiveness); now it’s 96 to 98 percent.’ Those are the things we’re trying to pass on to the public.”

When I asked how effective the public-awareness campaign has been, De La Cruz said it’s been positive—although it’s always a challenge to convince some people they’re at risk.

“Because of the high-risk population I work with in the recovery centers, the homeless shelters and the county jails—to me, it’s very positive,” he said. … “I try to go to the senior population, because of the baby boomers. … Many of them don’t know they are infected with hepatitis C and have passed it on to their loved ones.

“In the east valley, there isn’t a lot of knowledge about HIV and how it’s transmitted, and lots of times, you find people out there with HIV, and they’re in the hospital because they didn’t think they were at risk, and many years had gone by with symptoms developing. It’s also happening with hepatitis C. Now their livers are failing; now their skin is yellow; now they are tired and exhausted. … (Some people think), ‘You have no risk for hepatitis C if you’re a woman, you’re married, you have kids, you have a job, you don’t do any drugs, and you don’t do any of this or that.’ But people forget about the partners they’ve had, or something that might have happened 20 years ago that was just one time.”

For more information, call the Desert AIDS Project at 760-276-5097.

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