Ronni Marks, Founder/ ED of HCMSG/ Patient Advocate


 I have heard lately that some doctors and others are questioning if there is still a need for HCV support groups. While I agree these groups are no longer needed for hand holding purposes  as they were in the interferon era, they now have taken on a new look. These are some of the reasons I believe there is still a very important role for educational support groups.
 
As I travel the country training people, I see the lack of education about HCV, both from patients, as well as doctors, particularly in rural areas.  This is why I now call them Educational Support Groups.

Support groups are a great source to find patients who may want to become advocates for their own health as well as for others who cannot speak for themselves. Part of the group can be demonstrations to patients on the few easy steps it takes to call their local and state politician’s office to help educate them on HCV. It is a good way to show patients how their voice matters!

For those of us who experienced treatment before the DAA’s, the side effects of today are minimal. But for those who are treatment naïve, for some, side effects exist.  While the treatments may be for a shorter time, some patients still need help in dealing with having HCV. 

Even after cure, I am seeing some patients return to groups stating that they are experiencing post treatment issues, both physically and psychologically. For some they are not aware that they need to follow up, for those with cirrhosis knowing they should be having MRI’s done every six or twelve months. These are some of the things patients have told me they have learned by attending a group.

​For those who know there is a cure, but have no access to treatment due to restrictions, this has impacted them psychologically. They feel “stigma” now more than ever. I have even had a few folks say it makes them feel "unworthy".  This is to me is heartbreaking. 

For those who do not have access right now, it is a good source for how one can maintain their health while awaiting treatment.  For those who have cured, ensuring they stay cured and healthy. Working with the substance use community, I have heard too many times that they are not aware that they can become REINFECTED once cured. This message must be told loud and clear.

There is a whole new generation of young people who have become infected with HCV through use of injecting opioids and heroin sharing needles. More education in regard to transmission should be included in these groups.

I strongly urge those who are looking for education and support to join a group whether it is on line, in person, or thru tele-support.  HCMSG has links to many helpful sites,

​http://www.hepatitiscmsg.org/links.html   and listing in New York for HCV and Co- infection support groups  http://www.hepatitiscmsg.org/hep-c--co-infection-support-groups.html.         

If your organization, hospital or clinic is interested in training for facilitating and setting up a group, HCMSG can be instrumental in helping.  (Free of charge)    Please refer to:
The Hepatitis C Education and Support Group Assistance Program  http://www.hepatitiscmsg.org/the-hepatitis-c-education-and-support-group-assistance-program.html for all the details.
 
Patients must never give up hope!
 

Nirah Johnson @HepFreeNYC Health Guide January 04, 2016

Some people who have been able to cure their hepatitis C with either the newer treatments or older ones may be curious as to whether or not they have become immune to the virus. Here's what you need to know.


Hep C is a complicated virus


There are at least six genotypes of the virus, and many subtypes of each genotype. Hep C mutates (changes form) frequently when replicating.


Because the Hep C virus has so many types and forms, scientists have not been able to develop a vaccine to protect against the virus. There is no vaccine to prevent Hep C.


Even if you clear the virus, you are not immune


About 25% of people exposed to Hep C spontaneously clear the virus during the acute phase (first 6 months) of infection, and do not go on to chronic infection. In this case, blood tests will always come back HCV antibody positive and HCV RNA negative. Even if you clear the virus, you are not immune. You can get infected with Hep C again, and you may not clear it a second time.


Super-infection


If you have Hep C, it is possible to be “super-infected” with an additional genotype of the virus. If you have chronic Hep C, it is still important to avoid exposure to other people’s blood. 


You can be re-infected


If you are cured of Hep C through treatment, you could get “re-infected” from your own old blood, or the infected blood of another person. After treatment, it’s important to throw away your own old personal care items, drug use equipment or anything that may have blood on it. Avoid contact with the blood of others.


Prevention


The only way to prevent Hep C infection, re-infection or super-infection is to avoid contact with blood.

• Do not share any drug use equipment (injection or intranasal)
• Do not share personal care items (razors, toothbrushes, or washcloths)
• Do not share medical equipment (syringes, finger-prick devices)
• Avoid sex that may cause bleeding.

You can be free of Hep C!
Get tested, get cured and make sure you avoid re-infection.


- See more at: http://www.healthcentral.com/hepatitis-c/c/198689/178938/immune-hepatitis/?ic=edit#sthash.N1UQbYNM.dpuf See more at: http://www.healthcentral.com/hepatitis-c/c/198689/178938/immune-hepatitis/?ic=edit#sthash.N1UQbYNM.dpuf

CARLY SZABO, ASSISTANT EDITOR


​BY CDirect-acting antivirals (DAAs) in the treatment of hepatitis C virus (HCV) have changed the face of hepatology forever.

The miracle drugs have provided a cure for upwards of 95 percent of individuals involved in clinical trials for medications such as Sovaldi and Harvoni. Yet even with these astounding medical advances, patients still fear the worst when faced with an HCV diagnosis.

In an interview with CURE Hepatitis C, Donald Jensen, M.D., recently retired professor of Medicine and Director of the Center for Liver Diseases at the University of Chicago Medical Center, shared his thoughts on why physicians and specialty pharmacists alike need to work to ease patients’ minds and assure them that there is a cure to the disease.

Dr. Jensen makes special efforts with his patients to educate them more about their infection. In addition to providing them with informational websites such as the American Liver Foundation (ALF) web site and the Centers for Disease Control and Prevention (CDC) web site, he allows patients to email him directly with information they have found online so that he may check the validity before using it as a reference.

“A lot of physicians don’t give their patients their email address. They don’t want patients to have their email address … because then they become legally liable for information that they transmit,” Dr. Jensen said. “I’ve never been really concerned about that. It’s counseling that I’m doing, I’m not telling them what treatment to do or that sort of thing. It’s more helping them with educational information.”

With the amount of misinformation circulating about HCV, it makes sense to provide patients with that extra care. In fact, many patients are told by their referring physicians that they have a death sentence upon diagnosis, according to Dr. Jensen, which is severely misguided.

In addition to being told that they are going to die from their liver disease, patients are also led to believe there is no cure for HCV.

“[DAAs] represent a cure for hepatitis C and that’s an important message that we need to get out. This is a curable disease. It can prevent other complications down the road, or most of the complications down the road, if someone is cured of their disease,” Dr. Jensen said. “For years, we as physicians avoided the ‘cure’ word and used ‘sustained response,’ and sustained response is not the same as cure. It does not connote the same information that cure does.”

Dr. Jensen is a huge advocate of physicians using the word “cure” in relation to HCV rather than sustained virologic response (SVR).

“I think we need to say [cure], not only to reassure the people who have had a sustained response, but also to encourage people that haven’t yet been treated to undergo treatment,” Dr. Jensen noted. “If they don’t think it’s a curable disease, they’re going to say, ‘well why should I get tested? Why should I get treated?’ I think using the ‘cure’ word right up front is very important.”

Dr. Jensen even went so far as to organize a reception at the University of Chicago for patients who were cured between the years of 2011 and 2013. Forty-two patients attended the reception and some even gained enough courage to speak about their disease despite the stigma attached to it.
 
Out of that reception evolved a web site authored by Dr. Jensen that serves as a patient portal for sources of information regarding HCV, and that discusses the importance of “cure” when speaking about HCV treatment.

However, even with existing cures available, patients still struggle to access curative medicines because of the high price tag that accompanies drugs like Harvoni and Sovaldi. Dr. Jensen suggests a possible solution to this issue.

“The role of specialty pharmacies to take over a middleman role to try and negotiate to get some access to these medications through their insurance provider, I think has been very important,” he said. “They always had a role in hepatitis C therapy even with interferon, but I think their role is even bigger now because there are far more patients being treated now than there were in the interferon days. I think specialty pharmacy becomes very important in helping to negotiate for coverage and access to treatment.”

In addition to the high cost of treatment, there exist restrictions by Medicaid regarding coverage for hepatitis C treatments only for the very sickest of patients, making access even more difficult.

“Sometimes letters from [physicians] can help in arranging coverage for treatment, but the big trend that we never ever faced before is this access to care,” Dr. Jensen said. “It’s really unconscionable; we have a treatment that cures hepatitis, that can prevent cirrhosis, prevent liver cancer, prevent the need for liver transplant in millions of patients, and yet to be denied access to that medicine because it’s too expensive is really a shame on both the pricing by the pharmaceutical industry as well as by the insurance and government agencies that are legislating the restrictions.”

The high cost of medication has also changed the patient-physician dynamic, according to Dr. Jensen. Prior to this trend, physicians never got more involved in a patient’s treatment than prescribing medication.

“A doctor never got involved much more in the price of the medicines or in the negotiating to get treatment, except on rare conditions for very experimental therapies,” Dr. Jensen explained. “So I think this for us is sort of a new experience for there to be this issue of pricing of medications and astounding copays that patients would sometimes have to pay out of their own pocket for these medicines. I think for us as physicians this is sort of a new era for us to be dealing with negotiating payment for medications.”

Additionally, the astronomical pricing of medications make patient adherence to treatment difficult. However, Dr. Jensen’s practice has a special policy in place where nurses follow up with patients regularly, even after treatment has ended, to make sure patients are following doctor’s orders, remaining adherent to medication, and sustaining a virologic response well after treatment has ended.

But Dr. Jensen commends HCV patients for being generally adherent despite the multitude of factors that could prevent it. He explains that HCV patients are motivated individuals who are pretty good about taking their medicines, not unlike HIV patients who have similar adherence behaviors.
 
Patients with HCV do have a great reason to remain adherent to their regimen. The medication is proven to be a cure in many cases, has limited side effects, and provides patients with an avenue to a healthier life. Dr. Jensen assures his patients that the new treatments are tolerable and will provide them with a cure.

“I think first they should know that the treatment is simple and highly effective and really free of major side effects,” Dr. Jensen said. “For the most part I’m really telling them how easy this therapy potentially really is. And I’m telling them how important it is that they take their medicine on a daily basis, that they don’t miss doses.”

Dr. Jensen is positive about the cure for hepatitis C, and says that the possibility for eradication is clear in our future.

“It turns out we probably don’t need to treat everybody, and we can probably still get to a state by 2030 where we reduced significantly the prevalence of hepatitis C, as well as the morbidities associated with hepatitis C (liver cancer, cirrhosis and need for liver transplant) by 2030, even if we treat a significant percentage of those who have hepatitis C and not necessarily everybody,” Dr. Jensen said.

But Dr. Jensen also cautions that this projection comes with a stipulation. If the population of young injection drug users in the United States decreases, then hepatitis C may have a better chance at being fully eradicated. But if the problem of injection drug use continues to grow, the possibility of eradication may turn out to be a pipe dream.

To Continue: http://hepatitis-c.curetoday.com/news/physicians-and-hcv-dont-be-afraid-to-say-cure/1