Provided by NATAP.org
from Jules of NATAP: in this article several patients background stories are highlighted, they receive care at this HIV clinic whose medical director is the well known researcher Dr Trevor Hawkins. Individuals from the inner city are starkly different in large urban cities like NY, Miami, Dallas, Detroit, I could go on. Many of these highly marginalized underserved individuals are severely isolated from the healthcare system, they suffer from a multitude of both rational & irrational fears that are barriers to testing for HCV and prevent them from getting into a care system and from remaining in the care system. As well, the healthcare systems has itself many barriers to these individuals entering the system. These individuals are most often African-Americans & Latinos and IDUs in inner cities like NY, Los Angeles etc. It is simply totally inadequate to in general merely tell individuals in these communities they are at risk for having HCV & should be tested & receive care if they are HCV+. There are numerous ways in which they don't trust the healthcare system or the individuals who work in it, in some cases their reasons are justified and helps to explain why they are 'marginalized' & thus 'underserved, terms that are often not fully appreciated or understood if you don't work or live in these communities. These individuals often do not appreciate that a person needs access to healthcare & at the same time they do not know how to navigate the system. They live their lives on the margins of society, often without jobs, without contact with mainstream society, and live in communities of individuals just like themselves who provide a system that supports their thinking and behavior that does not serve them well. If services are available or offered to them they are very fearful & suspicious of them, and as I say with often rational or irrational justifications. These communities are ever-present & of significant numbers in cities throughout the USA and include in addition to those mentioned above Washington DC, Chicago, Houston, Seattle, Ft Lauderdale, West Palm Beach and on and on. These communities are the most disproportionately affected by HCV, suffer with the highest rates of HCV, have the most difficulties accessing care of any type particularly for HCV, the healthcare system does not welcome them, they respond to HIV & HCV treatment less favorably, they need much more services just to to interface with the healthcare system, and are the key to curing HCV. We will very soon have HCV treatment regimens that will be interferon-free consisting of 2-4 antiviral drugs, where 12-24 weeks duration of therapy will cure patients. In concept we will have the capacity to cure everyone with HCV, but if we do not provide a proper & adequate labor-intensive healthcare system for these communities we will not be able to do this. In NYC we are implementing the first 'Urban HCV Plan', a 'HCV Ryan white Care Act'. Unlike HIV there is no infrastructure for care & treatment for the poor & uninsured in HCV. Local, state & federal governments do not provide this for HCV. In our NY project called 'Check Hep C', we have a large-scale cutting edge awareness program, are implementing 5,000 rapid HCV tests, at 8 testing sites throughout the most hard-hit inner cities where HCV is most prevalent, we provide 7 patient navigators whose job is to stay with the client from the very moment they test & throughout the entire care scenario & to guide & navigate them, we provide 6 community based clinics in those same inner city communities where individuals prefer to receive their care, we provide access to treatment if warranted, and we provide weekly internet web-based education & case study review for the clinicians at the care centers by expert hepatologist researchers. This project was designed by me 4 years ago as a model that could be duplicated anywhere. In the US we estimate 80% of HCV+ individuals are undiagnosed. They are undiagnosed for good reasons, it will not be easy to identify everyone. There are reasons that 80% remain undiagnosed. There are as numerous different types of barriers as there are different types of patients, and there are many different types of patients, and this fact very often is unrecognized. We need diverse patient-oriented strategies & solutions to get people tested & into care, and this is & will be loaded with difficulties. The medical miracle that we are approaching is I think the top medical development of the last 50 years, that we will have the capacity to cure almost everyone suffering with a viral infection, HCV, with only 12-24 weeks of treatment. This goal will not be reached if we don't provide an adequate HCV care system. Who will step up to begin to implement such a large-scale national system? So far there has been a very small federal government response. I estimate we need $40 million to get a good start at such a project. Jules Levin
Santa Fe New Mexican.com
But the Santa Fe health care provider, which primarily treats HIV patients, recently began offering free testing for hepatitis C- the cause of most liver cancer and liver transplants - partially because New Mexico has a higher-than-usual prevalence
Oct 6, 2012.
In the year 2020, the hottest item for sale on eBay will be a healthy human liver. Not really; that's just a dark inside joke between staff members at Southwest Care Center.
But the Santa Fe health care provider, which primarily treats HIV patients, recently began offering free testing for hepatitis C - the cause of most liver cancer and liver transplants - partially because New Mexico has a higher-than-usual prevalence of the disease.
It's better to get tested for the disease early, center staff say, instead of waiting until you have symptoms - some of which include throwing up blood - because treatment is more effective the sooner it is provided.
Like its siblings, hepatitis A and B, hepatitis C is a virus that affects the liver and can lead to cirrhosis and cancer of the liver. But unlike A and B, there is not a vaccine for hepatitis C. It is curable, but not always, and catching the disease earlier gives patients a better chance of recovery.
The disease is transmitted via blood. So health care professionals who handle needles, intravenous drug users, people with tattoos and people who snorted cocaine or other drugs through a straw that was used by another person (who might have had a open sore in the nasal cavity) are at increased risk for getting the disease.
But a wild lifestyle isn't the only risk factor. The disease wasn't identified until 1986, and public blood supplies weren't screened for the virus until 1992. So anyone born between 1945 and 1965 has a greater likelihood of having been exposed to the virus.
Baby boomers are especially at risk, according to Stella Reed, director of outreach at the center, not only because they have a greater chance of having had a blood transfusion before 1992, but because they routinely lived communally, and the disease can be transmitted via a shared toothbrush or razor.
Treatment of the disease includes the drugs interferon and ribavirin, one of which needs to be injected daily and both of which come with significant side effects. A number of studies are being conducted with a goal of eliminating the need for injections and the number of pills patients must take.
Terry Bryant, program manager of the state Department of Health's HIV and hepatitis C epidemiology program, said data on hepatitis C is sparse. But, he said, in a 2009 U.S. Centers for Disease Control and Prevention study of five states - Connecticut, Minnesota, Oregon, Colorado and New Mexico - New Mexico had the second highest occurrence of disease. New Mexico's rate was about 147.4 people per 100,000 people, Bryant said, while New York state, the state with the highest rate of the disease, had a rate of 183.4 cases per 100,000 people. Nearby Colorado had a rate of just 68 cases per 100,000 people.
Bryant said New Mexico's high prevalence of intravenous drug use is one of the factors that could contribute to New Mexico's higher rates of the disease.
Southwest Care Center purchased 1,200 kits to test for exposure to the disease earlier this year. About a quarter of the tests were paid for by the Department of Health.
According to Reed, the center has administered about 200 tests since March and about 18 people, or 9 percent, tested positive for the disease - much higher than the national average of about 2.5 percent.
Some people can carry the virus for years before it becomes symptomatic, while others either clear the disease naturally, usually within six months of exposure, or become sick.
Mary Boudreau, a 62-year-old massage therapist and esthetician who tested positive for hepatitis C in 2007, admits she "partied" in her youth - including snorting cocaine - and got a $3 tattoo from a place called Sailor Jerry's in Hawaii in 1971. But she never felt sick.
It was a work-related pin prick - she does medical skin-care work for doctors sometimes - that prompted her to get tested in 2007.
When she found out she was positive, "the whole room turned a very bright white and it was kind of scary," Boudreau said.
She didn't have insurance, so she put her name on a waiting list for a clinical trial on hepatitis C. She began treatment in January 2010. She was in and out of treatment - taking up to nine pills per day for six months at a time - for about a year and a half. But in the end, she was cured. She now has undetectable amounts of the virus in her blood.
Sharon Ebert, 59, suspects she contracted the disease during a blood transfusion when she had her tonsils out at age 8. But she didn't see symptoms until decades later.
"I'm like the energizer bunny," Ebert said, "used to working 60 to 70 hour weeks, and all of sudden I couldn't do it. I kept getting more and more tired." She also had soreness on her right side where the liver is, but her doctor of 30 years told her the ailments were just "stress."
When she moved to Santa Fe in 2009, she had a panel of blood tests done and found out she had hepatitis C.
Finally, Ebert said, the fact that hard liquor and most pain medications make her violently sick made sense. Alcohol exacerbates the condition, and people with hepatitis C should not drink, Reed said.
Because the illness hadn't caused her any symptoms besides fatigue in 40 years and she doesn't like taking pharmaceutical drugs, Ebert waited and did research before deciding to seek treatment. The fact that she had recently become a grandmother, Ebert said, is what ultimately made her decide to accept treatment.
"It doesn't matter how you got it," Ebert said. "You got it. Deal with it. To me, the most important thing is attitude," she said. "You need to have a positive attitude and strong willpower. There are some days you don't want to get out of bed."
Both women said the care they received from Southwest Care Center was key in their recovery.
Ebert had insurance but couldn't cover the $400 monthly copay for the treatments. Southwest Care Center helped her gain access to copay assistance. The center helped Boudreau by connecting her to a pharmaceutical company that funded the clinical trial in which she participated.
"They treat you as an individual," Ebert said of the staff at the center. "They don't see you as a number who is coming in the door. From front desk to pharmacy, you always feel like you are their priority, not the money you bring in. They are there to make sure you are OK. At Southwest Care Center, you are not on your own. You have a team that supports you and helps you through the rough spots."
Southwest Care Center currently offers free hepatitis C tests as well as free confirmatory tests - more than one test is needed to confirm a diagnosis of the disease - for patients who test positive and meet certain criteria. The center also works with drug companies who are conducting clinic trials in hepatitis C treatment and in some cases provides free care to patients who are accepted into certain trials.
For more information or to make an appointment to be tested, call 989-8200.