by Nandita Raghuram
Jun 16 2016 6:39 PM   Broadly a vice news website

Hepatitis C is preventable and curable—but it now kills more Americans than any other disease. According to experts, stigma against intravenous drug users and sex workers may be to blame.
In 2014, deaths related to hepatitis C reached a record high, according to a recent report from the CDC. In fact, according to a second CDC study, in 2013, hepatitis C–related deaths were higher than those caused by 60 other infectious diseases combined, including HIV.
The hepatitis C virus is deadly, although it can lie in wait in a patient's blood for decades without causing symptoms. End-stage hepatitis C results in jaundice, cirrhosis, and liver failure, as the disease slowly but surely attacks the liver; for some people, it eventually causes death. However, the disease is also preventable and curable. While the CDC study says that old cases of hepatitis C largely come from baby boomers who have received unsafe blood transfusions and injections, a new set of cases stems from intravenous drug users.
Read more: Stigma Puts Sex Workers at Higher Risk of HIV
The number of acute cases has more than doubled between 2010 and 2014. The virus' almost-invisible initial symptoms are partially to blame—about half of the people who have hepatitis C don't know they're infected. Emalie Huriaux, the director of federal and state Affairs at Project Inform, says that, since the liver can be damaged over a number of years, "people may not have any clear symptoms, so they might not seek a test." There's also no vaccine for hepatitis C.
Instead, prevention relies on increased screenings. According to Dr. Nilesh Kalyanaraman, the chief health officer at the Baltimore Health Care for the Homeless, "Getting testing out more consistently will help diagnose people at an earlier stage." These screenings are often difficult to obtain, though. Ryan Clary, the executive director of the National Viral Hepatitis Roundtable, explains that the primary problem is that "there's a lack of awareness, there's a lack of education, and there's a lack of widespread use of screening guidelines among medical providers."
Assuming a patient gets tested, receiving treatment is also difficult. Lindsay Roth, a community organizer at Project Safe, points to bureaucratic restrictions. "Because [treatment is] expensive, there's a lot of red tape for it. People can't prescribe to people on Medicaid because the state doesn't want to shoulder that cost."




Often, doctors' hands are tied because of unfair policies. If a provider were to prescribe treatment, Clary explains, some "insurance companies or the state Medicaid will deny access and in most cases, deny an appeal." This runs counter to clinical treatment recommendations, he says. Though there have been some small victories around these restrictions, "it's very slow."
Policy makers have this narrative that drug users are reckless, that drug users aren't full human beings.
One prominent restrictions is based on how sick you are. Since the cost of treatment is so high, many state Medicaid programs only allow people in the later stages of disease to access treatment. According to Clary, often only people with really advanced liver disease can get medicine. He says that this places a burden on injection drug users. "People who are newly infected with hepatitis C—which is largely through injection drug use—are not going to have advanced liver disease because they're newly infected."
Drug users are also discriminated against based on their level of substance abuse. Clary says that "an insurer will require a patient to be sober/abstinent for a number of months before covering treatment." Dr. Stacey Trooskin, an assistant professor of medicine at the Division of Infectious Diseases and HIV Medicine at Drexel University College of Medicine, similarly explains that "many Medicaid programs around the country and some private insurers require patients to provide a negative urine drug screen and blood alcohol level and a provider's documentation that a patient has abstained from drugs for six months or a year prior to approving life-saving therapies."
Often, this comes from underlying (and incorrect) notions about people who use drugs. Huriaux explains that there's a common narrative among insurance companies and public payers like Medicaid programs that "drug users can't adhere to treatment or that they'll get reinfected." Huriaux says these assumptions are not based on research. In fact, "all of the clinical studies that have been done on hepatitis C treatment show pretty equivalent outcomes for people who use drugs in terms of success of treatment."
Roth points to this as one reason for the high rate of hepatitis among these groups of people. She argues, "If we provide a treatment, and lower the burden of disease in that community, there'd be less transmission." Unfortunately, "policy makers instead have this narrative that drug users are reckless, that drug users aren't full human beings, that they don't deserve full health care."
Roth says an equally important form of prevention for drug users is access to both safe injection equipment and a safe place to inject. But, as Huriaux explains, "in most parts of the US, that's exceedingly hard to do. Many communities in the US have no legal, free access to syringes and other injection equipment."
People are continually pushed out of institutions like hospitals and primary care providers. They feel uncomfortable and they feel unsafe.

Homeless people face similar barriers when trying to access treatment. Dr. Kalyanaraman points to the fact that hepatitis C medications are generally restricted to specialists. While the Baltimore Health Care for the Homeless has implemented a program to train primary care physicians to be able to manage and treat hepatitis C, previously they would have to refer patients to another doctor. For the homeless population he treats, that didn't always work.
To Continue reading-  https://broadly.vice.com/en_us/article/its-destroyed-peoples-lives-the-shocking-rise-in-hepatitis-c-related-deaths

​ 06/08/2016 03:00 pm ET | Updated 1 day ago

   Elizabeth G. TaylorExecutive Director of the National Health Law Program (NHeLP)

• Imagine you are diagnosed with cancer. Your doctor tells you that your cancer is completely curable. But unfortunately, the cure is very expensive. It is so expensive that your insurance won’t pay for the cure until your cancer has advanced to stage three. You will have to suffer for months — possibly even years — before you have a chance at a cure. You may experience serious symptoms while you wait for a cure — fatigue, organ damage and depression. Your insurance plan may pay for treatments that ameliorate some of your symptoms, but they will not cure the underlying disease until you get very, very sick. And when you do get the cure, it won’t undo a number of problems that you developed along the way. This scenario sounds unfair.
  
  But this is nearly the exact scenario that states are imposing on their poorest residents. A series of new, breakthrough treatments for Hepatitis C was approved by the FDA starting in late 2013. But the cost of treatment was set very high, more than $80,000 for a course of treatment. Despite outrage from patients and advocates, drug companies continued charging thousands of dollars for these treatments. While the treatments are highly effective, the high cost put a cure out of reach for most people.
  
  Meanwhile, state Medicaid programs — the health care safety net that is supposed to ensure that the poorest Americans — have fallen far short. This is especially important, since, unlike cancer, Hepatitis C is an infectious disease. After years of declining infection rates, Hepatitis C infectious rates are rising.
  
  Late last year the Senate Finance Committee issued a report finding that pharmaceutical companies, such as Gilead Sciences, were working to maximize revenue of new Hepatitis C drugs, despite public claims of striving to help the largest number of patients possible. The Committee also found that half of state Medicaid programs were only providing curative treatment for Hepatitis C to those who are very sick, despite the fact that the standard of care for this serious, chronic, and communicable disease calls for treatment for anyone who is infected with the disease.
  
  These limitations are not only unconscionable, but they are also illegal. Last November the federal agency that oversees the Medicaid program made clear that states must make treatment available to all beneficiaries when it is medically necessary. Last month, a federal court in Washington State agreed with the agency, and issued a preliminary injunction ordering the State to provide treatment to all Medicaid beneficiaries regardless of disease severity.
  
  Since the federal guidance was issued, a few states have made voluntary changes to their policies. In April, New York voluntarily changed its policy upon the recommendation of its Drug Utilization Review Board. Just this week, Delaware announced that it will modify its coverage policies in order to avoid being sued. Earlier in the month, Florida announced that it is changing its policy to ensure that all Medicaid beneficiaries with Hepatitis C receive treatment. Florida health officials announced the changes after the National Health Law Program (NHeLP), Florida Legal Services and the Legal Aid Society of Palm Beach County successfullyadvocated on behalf of a Florida woman who had been repeatedly denied treatment, despite her worsening condition, because her Medicaid plan determined that treatment was not medically necessary. But as NHeLP and other organizations pointed out, federal law requires that Medicaid patients receive treatment for Hepatitis C promptly, not after they fall deathly ill. No patient, Medicaid enrollee or otherwise, should be forced to suffer and become sicker before receiving quality health care. These changes take important steps to ensure that Medicaid beneficiaries around the country have timely access to treatment that can cure their disease.
  
  There are still many more state Medicaid programs that are making treatment inaccessible for thousands of low-income Americans who are infected with Hepatitis C. State Medicaid programs must take action to ensure curative treatments are made available to low-income individuals and underserved communities of their states. Congress also has a role to play by making the cost of these drugs more affordable for the taxpayers who ultimately bear the cost of these life-saving treatments. Drug companies must be held accountable to ensure that treatment is truly accessible to those who need it most.
  
  Making a cure available to all is not only the right thing to do, it is necessary to comply with the law, and to prevent the spread of Hepatitis C.
  
  
• http://www.huffingtonpost.com/elizabeth-g-taylor/denying-medicaid-patients_b_10358766.html


• Follow Elizabeth G. Taylor on Twitter: www.twitter.com/NHeLP_org

 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!