GREENCASTLE : Adam Shaffer, a disabled veteran with two tours in Iraq, discovered that the Department of Veterans Affairs has a cure for one of the things that ails him.
Only thing is: He can't get it.
"With Hepatitis C, the government doesn't have enough money to give veterans the pills," said the 30-year-old Shaffer. "They put you on a waiting list, and it's long. You can't get any treatment. It will kill you."
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Monday, July 20, 2015
Sunday, July 19, 2015
Port Aransas man with hep c fights insurance company
"I want to live. I want to be healthy. I want my liver to be cured now, not when it's almost impossible to cure and then be put on the liver transplant list."
PORT ARANSAS -A Port Aransas man is literally fighting for his life.
Richard Titus, 56, has been duking it out with his health insurance company to cover a treatment that could save his life.
Titus recently discovered he has Hepatitis C, a liver infection caused by the Hepatitis C virus.
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Cost in the way of a cure for hepatitis C
Christopher Cummins, 42, believes he contracted hepatitis C through blood transfusions at birth. Last year, his insurance paid for a $100,000 treatment that eradicated the virus.
Dee’s liver is scarred, but just a bit too healthy for her insurance to foot the bill for the new medications that cure hepatitis C more than 90 percent of the time.
The Butler County resident, who suspects she got the virus getting a tattoo, was recently told by her doctor to come back in a year.
John, a retired small-business owner from Washington County who was given blood in the early 1990s, was also denied the antivirals. Now, as he watches a friend grow weak from liver cancer, he fears he’s glimpsing his future.
An appeal to a pharmaceutical company is Jennifer’s last shot at treatment after the insurance company denied her three times. The 34-year-old office manager – who said she gave up her heroin habit nine years ago – can barely make it through the workday because of fatigue.
I-MAK Exec Discuss Gilead Support Path Decision with HCV Advocate, by David Heitz
When Gilead decided this week to curtail access to lifesaving Hepatitis C drugs through its Support Path program, those living with the disease – and itching for a cure – had mixed reactions.
“I’m so glad I live in New Zealand and don’t have to go through all the bullshit some of you do!” said the member of one patient community.
“Insurance companies need to be covering these drugs,” said another. “Gilead is offering the patient assistant program on its dime. There is no obligation on it to maintain this program. We need to push insurers to start covering the treatments. We pay for insurance for a reason.”
In an interview with HCV Advocate, Priti Radhakrishnan of I-MAK (Initiative for Medicines, Access & Knowledge) took issue with the latter statement.
“I disagree with that point of view very strongly,” she said. “I don’t think the Gilead price point is anywhere near what the market can bear.”
I-MAK’s work centers around how and why Gilead has received a patent on sofosbuvir. Some countries were able to jockey in such a way that they have not had to pay outrageous sums based on a patent, like insurers in the United States must. Radhakrishnan explains this process very clearly in this opinion piece she wrote for CNN.
“In many countries across the world, they don’t have an insurance system,” she explained during the interview Sunday evening with HCV Advocate daily. “We need to look for companies to set more equitable pricing. But even here in the U.S., I disagree with that statement. Even as insurance companies take on exorbitant and overpriced drugs, the more the system has to bear that cost. And the cost ultimately is passed along to the consumer.”
You can read Gilead’s letter about curtailing the Support Path program here. Gilead did not respond to a telephone call and e-mail this morning by HCV Advocate.
In explaining its decision, Gilead makes the case that insurers need to begin paying for these drugs. It says it no longer will help patients whose insurers make restrictions based on low fibrosis scores.
So, to answer the questions so many ask: Correct, you can’t get these drugs unless you’re sick enough. And now it’s going to be even harder.
And if you’ve got mental or substance abuse problems and your insurer denies you? Gilead no longer will help in those cases either.
Carrie Yohe Johnson is a person with Hepatitis C in State College, Penn. She can’t get the drugs because her fibrosis score is 0. But her viral load is high.
She got the disease from her mother. Yohe has two children, both HCV-negative. She didn’t know she had the disease when she had the first child; she had a very low viral load when she had the second.
But she’d like to have a third child. Even though only 5 to 6 percent of mothers pass along Hepatitis C during childbirth, it’s still a risk most don’t care to take.
I'm a healthy person. I've never done drugs. I haven't drank alcohol since discovering my illness (not that I really ever was a drinker). I live a healthy life,” Yohe explained. “I've had one partner my whole life (my husband). I have young children and I teach preschool. I constantly worry about accidentally infecting others or whether or not my liver and body will last. Or if this disease will begin to attack my kidneys and heart as it has shown to do…before my insurance finally gives the meds. I don't think it's fair that I have to wait for a cure.”
So what can people like Yohe do? Lobby their members of Congress.
“Citizens can advocate by saying that we want to see transparence in the cost of drug development, and to mandate disclosures,” Radhakrishnan said. “The patient system is really broken, and the companies are way too powerful in terms of reforming laws in their favor. Their needs to be more citizen participation in the process to safeguard patient rights.”
“I’m so glad I live in New Zealand and don’t have to go through all the bullshit some of you do!” said the member of one patient community.
“Insurance companies need to be covering these drugs,” said another. “Gilead is offering the patient assistant program on its dime. There is no obligation on it to maintain this program. We need to push insurers to start covering the treatments. We pay for insurance for a reason.”
In an interview with HCV Advocate, Priti Radhakrishnan of I-MAK (Initiative for Medicines, Access & Knowledge) took issue with the latter statement.
“I disagree with that point of view very strongly,” she said. “I don’t think the Gilead price point is anywhere near what the market can bear.”
I-MAK’s work centers around how and why Gilead has received a patent on sofosbuvir. Some countries were able to jockey in such a way that they have not had to pay outrageous sums based on a patent, like insurers in the United States must. Radhakrishnan explains this process very clearly in this opinion piece she wrote for CNN.
“In many countries across the world, they don’t have an insurance system,” she explained during the interview Sunday evening with HCV Advocate daily. “We need to look for companies to set more equitable pricing. But even here in the U.S., I disagree with that statement. Even as insurance companies take on exorbitant and overpriced drugs, the more the system has to bear that cost. And the cost ultimately is passed along to the consumer.”
You can read Gilead’s letter about curtailing the Support Path program here. Gilead did not respond to a telephone call and e-mail this morning by HCV Advocate.
In explaining its decision, Gilead makes the case that insurers need to begin paying for these drugs. It says it no longer will help patients whose insurers make restrictions based on low fibrosis scores.
So, to answer the questions so many ask: Correct, you can’t get these drugs unless you’re sick enough. And now it’s going to be even harder.
And if you’ve got mental or substance abuse problems and your insurer denies you? Gilead no longer will help in those cases either.
Carrie Yohe Johnson is a person with Hepatitis C in State College, Penn. She can’t get the drugs because her fibrosis score is 0. But her viral load is high.
She got the disease from her mother. Yohe has two children, both HCV-negative. She didn’t know she had the disease when she had the first child; she had a very low viral load when she had the second.
But she’d like to have a third child. Even though only 5 to 6 percent of mothers pass along Hepatitis C during childbirth, it’s still a risk most don’t care to take.
I'm a healthy person. I've never done drugs. I haven't drank alcohol since discovering my illness (not that I really ever was a drinker). I live a healthy life,” Yohe explained. “I've had one partner my whole life (my husband). I have young children and I teach preschool. I constantly worry about accidentally infecting others or whether or not my liver and body will last. Or if this disease will begin to attack my kidneys and heart as it has shown to do…before my insurance finally gives the meds. I don't think it's fair that I have to wait for a cure.”
So what can people like Yohe do? Lobby their members of Congress.
“Citizens can advocate by saying that we want to see transparence in the cost of drug development, and to mandate disclosures,” Radhakrishnan said. “The patient system is really broken, and the companies are way too powerful in terms of reforming laws in their favor. Their needs to be more citizen participation in the process to safeguard patient rights.”
Friday, July 17, 2015
Gilead Limits Enrollment in its Hep C Patient Program to Pressure Insurers
In a bid to push back against payers, Gilead Sciences GILD -0.71% is limiting enrollment to its patient assistance program for hepatitis C drugs, which helps people obtain the Sovaldi and Harvoni treatments when they lack sufficient insurance coverage or the financial wherewithal to get the medicines otherwise.
The drug maker is taking this step after finding that some payers, despite receiving discounts in recent months, have continued to restrict patient access to its hepatitis C medicines. As a result, Gilead has been picking up the cost of the medicines for more people it would like seeking patient assistance, according to a July 1 letter sent to patient groups and community health providers, among others.
A Gilead spokeswoman declined to say how many people are enrolled in its Support Path assistance program, how many may be affected by the change or provide actions taken by specific payers.
Read more...
The drug maker is taking this step after finding that some payers, despite receiving discounts in recent months, have continued to restrict patient access to its hepatitis C medicines. As a result, Gilead has been picking up the cost of the medicines for more people it would like seeking patient assistance, according to a July 1 letter sent to patient groups and community health providers, among others.
A Gilead spokeswoman declined to say how many people are enrolled in its Support Path assistance program, how many may be affected by the change or provide actions taken by specific payers.
Read more...
Thursday, July 16, 2015
Canada: BC Transit Campaign to Raise Awareness about HCV Testing
In honor of World Hepatitis Day (July 28th), HepCBC Hepatitis C Education and Prevention Society has launched a month long campaign in seven cities across British Columbia, including Vancouver, Victoria, Richmond, Surrey, Kelowna, Nanaimo, and Prince George.
The goal of this campaign is to increase awareness about hepatitis C testing in British Columbia.
An estimated 80,000 people in British Columbia are infected with hepatitis C. Of those infected, 75 per cent are baby boomers (people born between 1945 and 1975). In addition, an estimated 44 per cent of those infected do not know they are infected.
- See more at: http://smartsexresource.com/health-providers/blog/201507/bc-transit-campaign-to-raise-awareness-about-hcv-testing#sthash.44Y7fG9w.dpuf
Wednesday, July 15, 2015
Hepatitis C rates in Oregon soar above national average
"About 80 percent of the people who die from hepatitis C in Oregon are between 45 to 64 years old."
When it comes to viral infections in Oregon, hepatitis C is far deadlier than AIDS.
A report out this week shows that infections from hepatitis C remained fairly stable in Oregon between 2009 and 2013 but deaths from the virus climbed steadily over that period. They're now six times higher than deaths from AIDS.
"There are 5,000 people living with HIV in our state," said Dr. Ann Thomas, a public health physician. "There are almost 10 times as many people living with hepatitis C."
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When it comes to viral infections in Oregon, hepatitis C is far deadlier than AIDS.
A report out this week shows that infections from hepatitis C remained fairly stable in Oregon between 2009 and 2013 but deaths from the virus climbed steadily over that period. They're now six times higher than deaths from AIDS.
"There are 5,000 people living with HIV in our state," said Dr. Ann Thomas, a public health physician. "There are almost 10 times as many people living with hepatitis C."
Read more...
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