Mission resident Todd Warren is hoping for $10,000 on his path toward a liver transplant – and he’s asking strangers to help him through a direct appeal, crowdfunding campaign.
Warren is part of a surge in patients with Hepatitis C seeking to crowdfund their shot at a cure at places such as GoFundMe, GiveForward and YouCaring. Although these sites have long been used for medical appeals, the increased efficacy and spiraling costs of treating the Hepatitis C virus has made it one of the maladies where patients more frequently use crowd sourcing.
Crowdfunding sites say they have seen a huge spike in campaigns seeking help with medical costs. San Francisco-based YouCaring spokesman Leonard Lee said a significant number of people are turning to the site for drug costs, especially cancer patients, those using experimental drugs and drugs still in clinical trials. He said new drug options often involve high out-of-pocket expenses. Each month, YouCaring has 6,000 new medical expense campaigns created, making it the largest category for fundraising on the site.
At GiveForward, a Chicago-based crowdfunding site, more than 70 percent of campaigns are medical. Within those campaigns, which far outnumber others for memorials, house fires, adoptions, and pet medical needs, hundreds are directly related to covering the costs of specific medications, spokesman Jay Foot said.
New medications, such as those from Bay Area-based biotech company Gilead Sciences Inc. and other biomedical companies, offer prospects of a cure that can cost as much as $1,000 per pill. Once the virus is eradicated, patients may become eligible for costly liver transplants.
Warren, 53, a lifelong San Francisco Giants baseball fan, is one of an estimated 3.2 million people in the U.S. who have chronic Hepatitis C, according to figures from the U.S. Centers for Disease Control and Prevention in Atlanta.
Hepatitis C is a liver disease, transmitted by a bloodborne virus. Some people with acute infection may have mild symptoms and recover after a few weeks, but others develop a chronic infection, resulting in inflammation, cirrhosis, or liver cancer. The combination of breakthrough drugs and organ transplant offers a hope of cure, but at astronomical prices.
Today, Warren, who was diagnosed with Hep C in March 1999, seems on his way to a healthier life, thanks to an expensive breakthrough treatment that he obtained through a crowdfunding effort spurred by friends from his San Francisco church. Living modestly on disability, Warren stays in a subsidized apartment owned by the Dolores Park Church next-door, where he serves as a part-time building caretaker.
He was unable to pay for the new drug, Harvoni, a $4,000-a-month pill regimen that is believed to be the first single-drug Hep C cure. He faced a $24,000 bill for a six-month treatment plan. But he was able to get on Gilead’s coveted Patient Assistant Program last winter to help him pay for the drug.
“This is my health,” he said. “You are your only advocate.”
Warren started on the drug regimen in January after spending nearly three weeks making “a lot of calls” between his financial medical team at California Pacific Medical Center in San Francisco, his insurance companies, his pharmacy and Gilead.
“The medical world has gotten really expensive,” he said while detailing his co-pays and anticipated costs for future treatment.
The medication, which he said makes him tired, has seemingly eradicated the virus in about four months. Now, he is back on a list for a liver transplant. But with this next step, expected in early 2016, comes a new set of costs, including anti-rejection medication, a whopping $3,000 out of pocket for a six-month supply.
His fellow congregants at the Cornerstone Church in San Francisco’s Mission District decided to step in. Since March, Warren’s GoFundMe campaign has raised more than $7,400 toward his $10,000 goal.
With medical costs piling up, Warren’s longtime church friend Tobee Chung-Vanderwall, a mother of three, approached Warren about a less traditional method of paying for his health care. She said Warren wasn’t the type of person to ask for money.
“People were, like, ‘You should just pray for the money,’” Chung-Vanderwall said. “But you’ve got to ask for the money. If you are proactive about it people may give.” And they did. More than 60 different people, many tapped in from Warren’s San Francisco faith community, have donated to Warren’s cause since March. “It is really interesting to see a community come together,” she said. “A lot of old friends are coming out of the woodwork.”
Giving time to the campaign to help her friend of 15 years has been worth it, Chung-Vanderwall said. She initially set a goal of $5,000. That amount was quickly met, and the goal was doubled to account for unexpected costs before surgery and during recovery. She said she hopes to throw a party once Warren hits his $10,000 goal.
Warren said he is sending thank you emails and making calls to those who have donated. He called the campaign “overwhelming” and “awesome.” Having Chung-Vanderwall and her husband championing his health made him realize he is “blessed,” he said.
The hefty price tag of Harvoni and its predecessor drug, Sovaldi, may be costly, but the high cure rates are real. Gilead has reported clinical studies of Harvoni showing up to 98 percent efficacy rates. It’s the out-of-pocket costs that are debilitating, financially.
University of California San Francisco Liver Center Program Director Dr. Jacquelyn Maher said coverage for Hep C medication depends on a patient’s insurance and sickness level. “The way insurance companies are handling the onslaught,” Maher explained, is to create algorithms with a checklist of criteria.
The drugs are only covered “for people with the most advanced liver disease.” For her patients at San Francisco General Hospital, the cost is usually covered by Medi-Cal, state insurance for low-income people, or other subsidized programs for disadvantaged residents.
“Because the drug is so expensive,” she said, “it’s being rationed, if you will.” For some of the most severe cases, usually involving cirrhosis, the drug regimen can cost up to $300,000. She said many health insurance plans are refusing to pay such high amounts.
Harvoni was released in October, and made $3.58 billion in sales for Gilead’s first quarter of the year, according to a company earnings report released at the end of April. Since its release it has brought in more than $5 billion.
A report released last month by IMS Institute for Healthcare Informatics, a health care industry research firm based in Connecticut, found spending on pharmaceuticals reached $373.9 billion in 2014, up more than 13 percent from 2013, the highest increase since 2001.
This may be good for Gilead’s and other companies’ bottom lines, but it puts a burden on those who lack certain coverage. After repeated inquires, Gilead did not respond to comment on their latest earnings, the Hep C drug prices or alternative ways to pay for treatment.
Like Warren, who turned to an online community to help with funding for a specific medical need, many others have started targeted campaigns through these online platforms.
A search for Hepatitis C treatment, Harvoni, liver transplant and other Hep C related campaigns pulls up dozens of people around the country on each of many crowdfunding sites. Each link is a quick glimpse into a Hep C patient’s medical life and is often a final plea for help from Internet strangers, long-lost friends, and the far reaches of social networks.