By Michael Atkin and Joel Keep
Updated about 10 hours ago

VIDEO: Meet the health crusader saving lives with cheap drugs(7.30)

It is straight from the script of Hollywood movie Dallas Buyers Club — an Australian hepatitis C sufferer has taken on a global pharmaceutical company, accusing them of failing to provide a life-saving medication at an affordable cost.

"The only difference between me and the guy in Dallas Buyers Club is I'm not running it as a business and I'm not making any money out of it, as much as I like to see him with his big wads of dollar bills," Greg Jefferys told 7.30.

Mr Jefferys was so sick from hepatitis C last year that he was unable to get out of bed some days.

He dropped out of his university PhD studies and quit many of his hobbies, including kayaking and fishing.

He desperately needed a drug called Sovaldi, manufactured by US pharmaceutical giant Gilead, but could not afford it without selling his house.

"You need a minimum of 84 [tablets] so its $100,000 for a treatment," Mr Jefferys said.

"If you haven't got the money, for a lot of people it's a death sentence — you die.

"I was right on the edge of cirrhosis of the liver, once you get cirrhosis of the liver you then open up to tumours and cancer."

The desperation to find a cheaper source of medication before it was too late lead Mr Jefferys to the Indian city of Chennai.

He found the same medication on sale for less than $1,000 and his recovery was immediate.

"The same treatment with the same drug in India is $900, so it's cheap there because the Indian government didn't recognise Gilead's patent," Mr Jefferys said.

"Basically as soon as I got home I started taking it. Within 11 days all my liver functions had returned to normal and within four weeks there was no virus detectable in my blood — I was essentially cured."

The patients with liver cirrhosis are sitting there and waiting, and so I'd have to ask the company — how do you sleep at night?


Dr Miriam Levy

Outraged at the prospect of patients suffering with hepatitis C, Mr Jefferys set up an alternative and much cheaper drug supply from India.

The demand was overwhelming, with Mr Jefferys providing the medication to over one hundred Australians in just a few months.

"I get about 40 to 50 emails every day, seven days a week and they're from people who have hep C, whose mother or father has hep C, wife [or] husband has hep C," he said.

"But I also get emails from liver clinics in Sydney, in Melbourne, in different parts of the world who are all trying to get this cheaper medication, because even the big hospitals can't afford to buy it and they're seeing their patients dying."

His actions mirror the plot of Dallas Buyers Club, which is set during the 1980s with protagonist Ron Woodroof forced to smuggle HIV/AIDS drugs into the US.

Mr Jefferys now runs a blog and Facebook group called Hepatitis C Treatment Without Borders.

Margaret Sonnemann, 61, was one of the sick Australians who received the Indian medication in the mail.

She was told about Mr Jefferys by staff at a major public hospital.

"I actually had cirrhosis of the liver, so basically I'm F4 and that's not too far from needing a liver transplant," Ms Sonnemann told 7.30.

After receiving the medication from India and completing her dosage, she has now been given the all clear.

"It took about a week-and-a-half for me to know something amazing had occurred, and I wasn't expecting to feel any kind of benefit that quickly, but after a week-and-a-half, I felt more energy than I can literally remember feeling," she said.

"It's just gotten better and better really."

Gilead 'denying treatment' to sufferersDr Miriam Levy treats patients with liver cancer, including those who are terminally ill, at Sydney's Liverpool Hospital.

She said it was unacceptable patients were being forced to seek the medication they needed from overseas.

"They're buying a drug online from overseas, you do that if you're a bodybuilder and you want to buy things online to make yourself look beautiful," Dr Levy said.

"You shouldn't have to do that if you've got a serious health problem in Australia, it is crazy."

She is calling on Gilead to significantly lower the price of the medication.

"They have a Volvo in my view and they're selling it at Rolls Royce prices and the reason why they can do that is there's no other cars and the problem is, is that reasonable?" Dr Levy said.

"There's at least three or four other companies who will have equivalent drugs coming to market over the next few years, but meanwhile the patients with liver cirrhosis are sitting there and waiting, and so I'd have to ask the company — how do you sleep at night?"

Ms Sonnemann is furious with Gilead Pharmaceuticals.
"Not only are they denying treatment to hundreds of thousands of people who would never be able to afford it, but it almost became an issue of 'they're out to get me'," she said.

"I felt like they were trying to kill me or something."

Gilead declined to be interviewed and instead provided a statement to 7.30, arguing it makes the drug available free of charge on a compassionate basis, but refused to say how many Australians had received the medication that way.

It said it had provided compassionate access to 400 patients with late stage liver disease at no charge.

However, Gilead refused to say if those patients were Australian or if it was a global figure.

The drug has been recommended for listing on the pharmaceutical benefits scheme, but negotiations between the company and the Federal Government have so far proven fruitless.

But the pharmaceutical giant said it hoped Sovaldi would be listed on the PBS by the end of 2015.

"We are working constructively with the Department of Health to reach an agreement on PBS listing conditions," the statement said.

"We have offered the Government a price that is consistent with the lowest price in the developed world.

"The issue of patients accessing generic medicines overseas highlights the importance of ensuring new hepatitis C treatments are listed on the PBS quickly."

Gilead said it was watching India closely to make sure the medication was not diverted and sold to Westerners looking for a bargain.

But Mr Jefferys is not concerned about the consequences and plans to continue supplying the medication.

"Well, I'm not doing anything illegal, I'm not worried about it," he said.

"What I'm doing is completely legal, completely bona fide.

"I've got a clear conscience — have they?"

http://www.abc.net.au/news/2015-08-20/hepatitis-c-sufferer-imports-life-saving-drugs-from-india/6712990

Ryan Clary -Executive director of the National Viral Hepatitis Roundtable

One out of every 100 Americans is living with a deadly and communicable virus, yet most can't access the cure which will save their lives and halt the disease's lethal trajectory.

Hepatitis C now kills more Americans each year than HIV/AIDS and is 10 times more infectious. It has become a leading cause of liver failure and liver cancer -- the fastest-rising cause of all cancer-related deaths. For too long this blood-borne virus has silently ravaged communities across the country, often going unnoticed and untreated until it was too late. Until 2013, the only treatments for hepatitis C were painful and effective only half the time, leaving many patients with nowhere to turn, despite their diagnosis.

But now the tide is turning. Multiple treatments for hepatitis C currently offer cure rates of near 100 percent with minimal side effects. Now some of the biggest obstacles facing hepatitis C patients are health insurers.

Many private health plans and most Medicaid programs are requiring patients to first reach late-stage, often irreversible, liver disease before they can access effective treatment, and some are even denying access to many people with a history of substance abuse and to people living with HIV.

According to new research led by the Center for Health Law and Policy at Harvard Law School, 42 state Medicaid programs with stringent restrictions for hepatitis C treatment may even be violating federal Medicaid law, which requires states to cover drugs consistent with their FDA labels.

Access for privately insured Americans is similarly dismal, with many health plans imposing comparable restrictions and then requiring exorbitant copays that place a cure squarely out of reach for most patients.

A growing body of research is also proving that these restrictions will have costly ramifications for both patient health and the U.S. health care system, especially as the baby boomer population--which is most at-risk for hepatitis C--reaches Medicare eligibility.

A new Milliman study finds that connecting baby boomers with a cure would save 53,000 lives over the next decade and save taxpayers $4.5 billion as this demographic transitions to Medicare. It's also worth noting that the true impact of such treatment access is likely even bigger because while the study considered patients who are currently aware of their infection, a growing number of baby boomers are diagnosed each day.

Recent research also suggests that curing hepatitis C can yield cost savings for private insurers and Medicaid in the short-term by reducing the need for hospitalization, liver transplants and other costly procedures. A study funded by the National Institutes of Health finds that innovative treatments are cost effective in 83 percent of new patients and 81 percent of previously treated patients. And additional research published in Clinical Infectious Diseases suggests that immediately treating hepatitis C patients with new treatments is cost effective, even for those with only moderate disease progression.

By imposing discriminatory treatment restrictions, Medicaid and private insurers are not only putting the lives of millions of Americans at risk; they are also fanning the flames of a major public health threat while driving up long-term health care costs for themselves and for American taxpayers.

The reality is that hepatitis C is the only deadly disease for which curative treatment is widely withheld from patients. Imagine if an insurer mandated that a cancer patient reach metastatic levels before receiving chemotherapy, or that a diabetic lose a limb before being eligible for insulin treatment.

It's time to end this blatant unethical and short-sighted disease discrimination. It's time to cure hepatitis C.

Ryan Clary is the executive director of the National Viral Hepatitis Roundtable (NVHR), a coalition working to fight, and ultimately end, the hepatitis B and C epidemics in the United States.


http://m.huffpost.com/us/entry/7976444?1439501385

MORE:HepatitisLiverLiver Disease

Meanwhile, high prices and stringent requirements from insurers and Big Pharma are limiting access to effective treatment.
By Chris Sweeney | Hub Health | August 11, 2015, 10:22 a.m.

The first thing Amy does after rising from the brink of death is apologize.

“I’m sorry,” she says, scanning the small crowd of first-responders who have formed a semi-circle around her. She rummages through her scalp with fingernails painted lime green. By a hair, she has missed becoming the city’s latest casualty of a heroin overdose.

It’s just past 2:30 p.m. on a broiling Tuesday afternoon, and Amy (whose name has been changed to protect her privacy) is lying in a small courtyard on the side of Wing Fook Funeral Home, a few blocks from Boston Medical Center. Earlier in the day she had purchased a $20 bag of heroin and snuck behind the fence and shrubs of the funeral home to a set of semi-private benches, where she shot up and overdosed. Boston Emergency Medical Services responded to the call in less than four minutes. Amy, who is 20, is the second overdose they have fielded since noon. Already, they’d treated a 28-year-old man who had collapsed on the men’s room floor at the East Boston Public Library. In about 25 minutes, they will respond to their third overdose of the day, a 35-year-old man they’ll find unconscious on the lawn of South Boston’s Moakley Park.

Wearing gray Abercrombie & Fitch sweatpants and a Red Sox T-shirt, Amy lets out a self-deprecating chuckle when Ed Hassan, a barrel-chested shift commander with Boston EMS, tells her that she wasn’t breathing when he arrived. She was resurrected only after Hassan squeezed a burst of Narcan—a drug that reverses opiate overdoses—up each of her nostrils, then vigorously kneaded his knuckles into her sternum.

As she comes to, Amy continues apologizing. Strapped to one of her ankles is an electronic bracelet. She says she just got out of the South Bay House of Correction, where she landed on an assault and battery charge. In response to a standard line of questioning about her medical history, Amy reveals that she’s allergic to amoxicillin, that she’s taking the bipolar drug Seroquel and the anxiety medication Klonopin. And that she has hepatitis C.

This last revelation, while not surprising, is alarming in what it represents: On top of an opiate epidemic, Boston is experiencing a burgeoning public health crisis within a severely marginalized population. As cheap heroin has flooded the state, hepatitis C rates among 15-24 year olds have surged. Between 2002 and 2009, cases of the virus jumped 74 percent within this young cluster, according to the Massachusetts Department of Public Health, and the most commonly associated risk factor was injection drug use. Worse, the trend shows no sign of abating. In recent years, more than 2,000 new cases of hepatitis C have been recorded annually in the under-30 crowd. If left to flourish, the cost of hepatitis C, in terms of suffering inflicted, lives lost, and health care expenditures, could be staggering.

Trending: The November Project Wants Mayor Marty Walsh to Lace Up His Sneakers [UPDATED]“The amount of frustration from my colleagues who do hepatitis C care rivals anything I’ve ever seen,” says Camilla Graham, an infectious disease doctor at Beth Israel Deaconess Medical Center who specializes in hepatitis C. “I’ve never experienced this before.”

If Amy is any indication, it’s about to get a lot worse.

• • •

Amid an opiate crisis that’s claiming roughly three lives a day, hepatitis C has been almost entirely overlooked. Attention and resources have been focused on the acute crises of daily overdoses and too few treatment beds. Governor Charlie Baker’s Opioid Addiction Working Group did not make a single specific reference to hepatitis in its 65 recommendations and accompanying action plan, which were released in early June.

SPONSORED CONTENTSuggested: Research news: The changing tides in cancer therapyBut the disease is making its presence known across the Commonwealth—and across the country. Hepatitis C was first discovered in 1989; today, it’s estimated that roughly three million people in the U.S. have what’s known as chronic hepatitis C infection. At this stage, the virus, which on the cellular level looks similar to the end of a medieval flail, is engaged in an ongoing assault against the liver, inflaming the organ and diminishing its ability to perform the metabolic tasks that keep our bodies in tune. This steady attack can eventually give way to all sorts of painful and expensive complications, making hepatitis C the leading cause of cirrhosis and liver cancer. It’s also the most common reasoncited for liver transplantations in the U.S., according to the Centers for Disease Control and Prevention.

Up until only a few years ago, treatment for hepatitis C was limited to potent old-school drugs that took months to work. They were not that effective and carried the potential for severe side effects. The treatment landscape changed drastically in 2013, when Gilead Sciences, headquartered in California, launched the drug Sovaldi, a highly effective medication that cost $84,000 for one 12-week-long course of treatment. A year later, the company launched Harvoni, a $95,000 combination treatment consisting of Sovaldi and another drug called ledipasvir.

While these drugs have been a boon for Gilead—combined sales for Harvoni and Sovaldi in the first quarter of this year alone came in at$4.5 billion—some experts say the profits come at the cost of immense suffering. Economist Jeffrey Sachs of Columbia University arguedearlier this month that Gilead “should be held responsible, morally and legally, for all of the HCV-related illnesses and deaths that occur as the result of their unacceptable pricing policies.” He went on to blast the company for bilking taxpayers and maximizing profits at a time when hepatitis C is “raging out of control” in some communities in the U.S. He also noted that the actual production cost of Sovaldi is approximately $1 per pill.

Graham, the infectious disease doc, agrees that the price of these drugs is outrageous, but she’s more alarmed by the constraints insurance companies have imposed on patients in need. Even hepatitis C patients who don’t have stigmatizing histories of injection drug use are struggling to get a prescription for these proven therapies. One of the most pernicious strategies insurers have deployed, Graham says, is refusing to pay for the new drugs until a patient’s liver shows signs of “advanced scarring.” In other words, instead of nipping the infection in the proverbial bud, treatment is being delayed at the peril of the patient.

“This is how crazy it is,” Graham says. Imagine, she says, a 54-year-old woman who got hepatitis C many years ago as a result of a blood transfusion. She is aware that she has the infection, her liver has “moderate scarring” but no signs of “advanced scarring,” and she’s visiting Graham specifically to be treated. “What I have to say to that person is, ‘If I were to cure you today—and it would be easy to cure you—you would go back to the general population of people who never had Hepatitis C. You would have no long-term consequences…But, unfortunately, I have to wait until you have developed advanced scarring. And at that point, I’ll be allowed to treat you, but I will then have to screen you for liver cancer every six months for the rest of your life.’”

With each prescription for Sovaldi that she writes, Graham must submit a prior authorization form to the patient’s insurance company, which covers the individual’s medical history and lets the insurer decide whether it will cough up the money for treatment. Prior authorization forms differ among insurers, but it’s not uncommon for them to include questions on whether the person has abstained from drugs and alcohol for the previous six months, whether the person has passed a urine test in the past month, and whether he or she has been in stable psychiatric condition for the past six months.

There is no data showing that mandatory periods of sobriety increases cure rates or decreases drop out rates, Graham says. She adds that doctors always have an obligation to ensure that a patient is ready and able to embark on a course of treatment. But Graham finds the practice of making them wait until their liver is sufficiently scarred before they can be granted a readily available treatment to be unbearable.

“This medicine is so well tolerated and it works so well in most patients that the only reason you would not treat everybody, once they’re ready, willing, and able to be treated, is because of the price. There is no other reason.”

Explaining this over and over to patients has taken its toll on Graham. “I will walk out of clinic just devastated because so many of my patients are crying because I have to tell them I can’t get treatment for them right now,” she says.

• • •

Hepatitis C isn’t the first infectious disease to ravage heroin users. The AIDS epidemic tore through the community from the ’80s into the early aughts. Needle exchanges and education efforts proved hugely successful in stopping the spread of HIV among heroin users. In 2012, the Department of Public Health wrote, “HIV rates among [injection drug users] are at such a low level that eliminating HIV transmission in this population is a feasible goal.”

But hepatitis C is not HIV, and the DPH has expressed trepidation that rising hepatitis C rates could undermine decades of public health gains. Among the many challenges posed by hepatitis C is that it’s a frighteningly hardy pathogen, meaning it can survive on surfaces outside the body for days, whereas HIV lives just a few hours. Moreover, exposures to even very small amounts of infected blood can transmit it.  “Viral loads are typically in the many millions with hepatitis C as opposed to the tens of thousands with HIV,” Graham explains.

This combination of resilience and virulence means that needles aren’t the only thing that need to be swapped out with each hit of heroin—spoons, cotton swabs, tourniquets, any component of a user’s “works” could be a source of infection. As such, much of the load in terms of first-line prevention falls on the handful of state-approved needle exchange programs, which supporters argue are chronically underfunded and dealing with a deluge of new clients. In addition to curbing the risk of transmission by giving out clean gear and disposing of used syringes, needle exchanges are an important linchpin that connect injection drug users with health services, including HIV and hepatitis C testing, says Meghan Hynes, who manages the AIDS Action Committee of Massachusetts’ needle exchange program in Cambridge.

But the reality is that if someone tests positive for the virus, whether they are an injection drug user or not, getting proper treatment is going to be a trying, prolonged ordeal. Even in a state that has near universal health coverage and some of the sharpest minds in medicine, the prognosis is not bright.

As Amy is loaded into the back of the ambulance and shuttled to the emergency department at Boston Medical Center, there is no talk of prior authorization forms or Sovaldi or stages of liver scarring. There are more immediate threats and barriers to care that she must first navigate.

Should we tame the opiate crisis in the coming years, it’s likely there will be an entire generation of young hepatitis C patients, just like Amy, in need of care. Will they be left careening toward cirrhosis, liver cancer, and a host of other horrific maladies? Or will they have access to the lifesaving treatments they need?

“Hopefully, things will change,” Graham says. “For many of us, the goal is to eliminate hepatitis C in the state of Massachusetts. We have all of the components needed to be able to do that, but at the moment we are very far away from the goal.”

he first thing Amy does after rising from the brink of death is apologize.

“I’m sorry,” she says, scanning the small crowd of first-responders who have formed a semi-circle around her. She rummages through her scalp with fingernails painted lime green. By a hair, she has missed becoming the city’s latest casualty of a heroin overdose.

It’s just past 2:30 p.m. on a broiling Tuesday afternoon, and Amy (whose name has been changed to protect her privacy) is lying in a small courtyard on the side of Wing Fook Funeral Home, a few blocks from Boston Medical Center. Earlier in the day she had purchased a $20 bag of heroin and snuck behind the fence and shrubs of the funeral home to a set of semi-private benches, where she shot up and overdosed. Boston Emergency Medical Services responded to the call in less than four minutes. Amy, who is 20, is the second overdose they have fielded since noon. Already, they’d treated a 28-year-old man who had collapsed on the men’s room floor at the East Boston Public Library. In about 25 minutes, they will respond to their third overdose of the day, a 35-year-old man they’ll find unconscious on the lawn of South Boston’s Moakley Park.

Wearing gray Abercrombie & Fitch sweatpants and a Red Sox T-shirt, Amy lets out a self-deprecating chuckle when Ed Hassan, a barrel-chested shift commander with Boston EMS, tells her that she wasn’t breathing when he arrived. She was resurrected only after Hassan squeezed a burst of Narcan—a drug that reverses opiate overdoses—up each of her nostrils, then vigorously kneaded his knuckles into her sternum.

As she comes to, Amy continues apologizing. Strapped to one of her ankles is an electronic bracelet. She says she just got out of the South Bay House of Correction, where she landed on an assault and battery charge. In response to a standard line of questioning about her medical history, Amy reveals that she’s allergic to amoxicillin, that she’s taking the bipolar drug Seroquel and the anxiety medication Klonopin. And that she has hepatitis C.

This last revelation, while not surprising, is alarming in what it represents: On top of an opiate epidemic, Boston is experiencing a burgeoning public health crisis within a severely marginalized population. As cheap heroin has flooded the state, hepatitis C rates among 15-24 year olds have surged. Between 2002 and 2009, cases of the virus jumped 74 percent within this young cluster, according to the Massachusetts Department of Public Health, and the most commonly associated risk factor was injection drug use. Worse, the trend shows no sign of abating. In recent years, more than 2,000 new cases of hepatitis C have been recorded annually in the under-30 crowd. If left to flourish, the cost of hepatitis C, in terms of suffering inflicted, lives lost, and health care expenditures, could be staggering.

Trending: The November Project Wants Mayor Marty Walsh to Lace Up His Sneakers [UPDATED]“The amount of frustration from my colleagues who do hepatitis C care rivals anything I’ve ever seen,” says Camilla Graham, an infectious disease doctor at Beth Israel Deaconess Medical Center who specializes in hepatitis C. “I’ve never experienced this before.”

If Amy is any indication, it’s about to get a lot worse.

• • •

Amid an opiate crisis that’s claiming roughly three lives a day, hepatitis C has been almost entirely overlooked. Attention and resources have been focused on the acute crises of daily overdoses and too few treatment beds. Governor Charlie Baker’s Opioid Addiction Working Group did not make a single specific reference to hepatitis in its 65 recommendations and accompanying action plan, which were released in early June.

SPONSORED CONTENTSuggested: Research news: The changing tides in cancer therapyBut the disease is making its presence known across the Commonwealth—and across the country. Hepatitis C was first discovered in 1989; today, it’s estimated that roughly three million people in the U.S. have what’s known as chronic hepatitis C infection. At this stage, the virus, which on the cellular level looks similar to the end of a medieval flail, is engaged in an ongoing assault against the liver, inflaming the organ and diminishing its ability to perform the metabolic tasks that keep our bodies in tune. This steady attack can eventually give way to all sorts of painful and expensive complications, making hepatitis C the leading cause of cirrhosis and liver cancer. It’s also the most common reasoncited for liver transplantations in the U.S., according to the Centers for Disease Control and Prevention.

Up until only a few years ago, treatment for hepatitis C was limited to potent old-school drugs that took months to work. They were not that effective and carried the potential for severe side effects. The treatment landscape changed drastically in 2013, when Gilead Sciences, headquartered in California, launched the drug Sovaldi, a highly effective medication that cost $84,000 for one 12-week-long course of treatment. A year later, the company launched Harvoni, a $95,000 combination treatment consisting of Sovaldi and another drug called ledipasvir.

While these drugs have been a boon for Gilead—combined sales for Harvoni and Sovaldi in the first quarter of this year alone came in at$4.5 billion—some experts say the profits come at the cost of immense suffering. Economist Jeffrey Sachs of Columbia University arguedearlier this month that Gilead “should be held responsible, morally and legally, for all of the HCV-related illnesses and deaths that occur as the result of their unacceptable pricing policies.” He went on to blast the company for bilking taxpayers and maximizing profits at a time when hepatitis C is “raging out of control” in some communities in the U.S. He also noted that the actual production cost of Sovaldi is approximately $1 per pill.

Graham, the infectious disease doc, agrees that the price of these drugs is outrageous, but she’s more alarmed by the constraints insurance companies have imposed on patients in need. Even hepatitis C patients who don’t have stigmatizing histories of injection drug use are struggling to get a prescription for these proven therapies. One of the most pernicious strategies insurers have deployed, Graham says, is refusing to pay for the new drugs until a patient’s liver shows signs of “advanced scarring.” In other words, instead of nipping the infection in the proverbial bud, treatment is being delayed at the peril of the patient.

“This is how crazy it is,” Graham says. Imagine, she says, a 54-year-old woman who got hepatitis C many years ago as a result of a blood transfusion. She is aware that she has the infection, her liver has “moderate scarring” but no signs of “advanced scarring,” and she’s visiting Graham specifically to be treated. “What I have to say to that person is, ‘If I were to cure you today—and it would be easy to cure you—you would go back to the general population of people who never had Hepatitis C. You would have no long-term consequences…But, unfortunately, I have to wait until you have developed advanced scarring. And at that point, I’ll be allowed to treat you, but I will then have to screen you for liver cancer every six months for the rest of your life.’”

With each prescription for Sovaldi that she writes, Graham must submit a prior authorization form to the patient’s insurance company, which covers the individual’s medical history and lets the insurer decide whether it will cough up the money for treatment. Prior authorization forms differ among insurers, but it’s not uncommon for them to include questions on whether the person has abstained from drugs and alcohol for the previous six months, whether the person has passed a urine test in the past month, and whether he or she has been in stable psychiatric condition for the past six months.

There is no data showing that mandatory periods of sobriety increases cure rates or decreases drop out rates, Graham says. She adds that doctors always have an obligation to ensure that a patient is ready and able to embark on a course of treatment. But Graham finds the practice of making them wait until their liver is sufficiently scarred before they can be granted a readily available treatment to be unbearable.

“This medicine is so well tolerated and it works so well in most patients that the only reason you would not treat everybody, once they’re ready, willing, and able to be treated, is because of the price. There is no other reason.”

Explaining this over and over to patients has taken its toll on Graham. “I will walk out of clinic just devastated because so many of my patients are crying because I have to tell them I can’t get treatment for them right now,” she says.

• • •

Hepatitis C isn’t the first infectious disease to ravage heroin users. The AIDS epidemic tore through the community from the ’80s into the early aughts. Needle exchanges and education efforts proved hugely successful in stopping the spread of HIV among heroin users. In 2012, the Department of Public Health wrote, “HIV rates among [injection drug users] are at such a low level that eliminating HIV transmission in this population is a feasible goal.”

But hepatitis C is not HIV, and the DPH has expressed trepidation that rising hepatitis C rates could undermine decades of public health gains. Among the many challenges posed by hepatitis C is that it’s a frighteningly hardy pathogen, meaning it can survive on surfaces outside the body for days, whereas HIV lives just a few hours. Moreover, exposures to even very small amounts of infected blood can transmit it.  “Viral loads are typically in the many millions with hepatitis C as opposed to the tens of thousands with HIV,” Graham explains.

This combination of resilience and virulence means that needles aren’t the only thing that need to be swapped out with each hit of heroin—spoons, cotton swabs, tourniquets, any component of a user’s “works” could be a source of infection. As such, much of the load in terms of first-line prevention falls on the handful of state-approved needle exchange programs, which supporters argue are chronically underfunded and dealing with a deluge of new clients. In addition to curbing the risk of transmission by giving out clean gear and disposing of used syringes, needle exchanges are an important linchpin that connect injection drug users with health services, including HIV and hepatitis C testing, says Meghan Hynes, who manages the AIDS Action Committee of Massachusetts’ needle exchange program in Cambridge.

But the reality is that if someone tests positive for the virus, whether they are an injection drug user or not, getting proper treatment is going to be a trying, prolonged ordeal. Even in a state that has near universal health coverage and some of the sharpest minds in medicine, the prognosis is not bright.

As Amy is loaded into the back of the ambulance and shuttled to the emergency department at Boston Medical Center, there is no talk of prior authorization forms or Sovaldi or stages of liver scarring. There are more immediate threats and barriers to care that she must first navigate.

Should we tame the opiate crisis in the coming years, it’s likely there will be an entire generation of young hepatitis C patients, just like Amy, in need of care. Will they be left careening toward cirrhosis, liver cancer, and a host of other horrific maladies? Or will they have access to the lifesaving treatments they need?

“Hopefully, things will change,” Graham says. “For many of us, the goal is to eliminate hepatitis C in the state of Massachusetts. We have all of the components needed to be able to do that, but at the moment we are very far away from the goal.”

      http://www.bostonmagazine.com/health/blog/2015/08/11/heroin-hepatitis-c/ 

Emalie Huriaux | Director of federal and state affairs, Project InformAs patient advocates working to eliminate hepatitis C, a leading cause of liver cancer and transplants, my colleagues and I have been thrust into a fight between hepatitis C drug manufacturers and payers; a fight focused not so much on values of good health as each party's bottom line.

Public and private payers currently restrict access to hepatitis C medications, often covering treatment only for people with advanced disease when irreversible damage has already been done. Payers claim they cannot provide access to everyone because hepatitis C drug costs will bankrupt them.

Manufacturers argue they need a high return on investment in successful drugs in order to pay for producing new ones. Some manufacturers note that they offer a blanket percentage discount to all payers and patient assistance programs to expand treatment access. Meanwhile, payers dispute these claims or state that discounts are insufficient.

The job of patient advocates is to ensure that people can access lifesaving medications by urging fair pricing of medications and appropriate coverage by payers. But advocates get caught in the middle of finger pointing between these two parties, both of which expect us to support them. There is no way for us to take an informed position when price negotiations and agreements between manufacturers and public and private payers are confidential. Payers' analyses of costs to their systems do not consider essential factors, including the cost of patients' deteriorating health and productivity, disability or death.

These analyses often overstate costs to taxpayers and the health care system. Fortunately, a recent analysis in Clinical Gastroenterology and Hepatology, "Why We Should Be Willing to Pay for Hepatitis C Treatment," describes the value of hepatitis C treatment, the importance of treating all
hepatitis C patients, and confirms that the total budget for treating hepatitis C is reasonable given its impact on the U.S..

The fight between manufacturers and payers needs to shift to consider the best interests of people with hepatitis C and public health. We have the opportunity to eliminate hepatitis C, an opportunity as great as eliminating polio or the hope of ending HIV.

Manufacturers and payers should not be able to hide negotiations behind confidentiality agreements, especially for public programs. Innovative ways of delivering breakthrough drugs that spread cost equitably between manufacturers and payers need to be developed. Ultimately, people with a life-threatening condition should not have their hopes of cure caught in a fight between manufacturers and payers over profits.