The irony of looking after sick people at work but not being able to look after her own health at home was not lost on Stephanie Moore.
The single mom and “memaw” from Enid, Okla., has a chronic stomach disorder called pancreatitis. Her body overproduces the enzymes necessary to digest food properly, causing inflammation of the pancreas. It’s not just unpleasant; it’s painful. It’s also expensive to treat – and Moore’s current job at a nursing home that’s been turned into a COVID care facility doesn’t come with health insurance or the wages to afford it on her own.
So Moore, 45, went without her medication for one year, and then another, until she’d spent almost a decade in agony, even after several surgeries. Every meal made her nauseous. She’d often vomit. She began to wonder whether it was worth living. Then a year ago, she found her way to Enid’s free community clinic, and everything changed with one referral.
“I had been miserable – miserable – and just felt like my life was over,” Moore said. “I couldn’t function as a mother or a person. When I found out I could get my medication for free, it changed everything. I thank god every day for this miracle.”
As Moore describes it, the miracle was being put in touch with Harbor Path, a nonprofit that distributes drugs donated by pharmaceutical manufacturers. Launched in the fall of 2012 to help people with HIV, and now expanded to a variety of other chronic conditions, the Charlotte, N.C.-based organization has so far sent medicines free of charge to 20,000 patients around the country. The scaling up continues, despite a relative shoestring annual budget of $1 million raised mostly via small grants from hospital foundations and state programs.
As Ken Trogdon, Harbor Path’s founder and president, put it: “When you hear every day what people go through to get their medications, if they can get them at all, it’s hard to take. We knew we could do something about the problem, and so we did.”
Originally funded by the Clinton Health Access Initiative (CHAI), which wanted a program in place by the time the next International AIDs Conference was held in Washington D.C, Harbor Path came into being around Trogdon’s dining room table in a matter of months. The idea was to create a seamless, streamlined application process for HIV patients who were uninsured, often taking four or five drugs, and lost, or at least challenged, when it came to getting the medicines they needed to survive.
To that end, Trogdon created a single web application, a portal where care managers and nurses could upload applications, get prescriptions approved, and arrange to have drugs delivered where needed. The next step was getting the pharmaceutical companies on board, and to expand beyond their own programs providing free HIV drugs to people in need.
Merck and Viiv, the HIV-treatment arm of GlaxoSmithKline, were the first to sign on. Trogdon, who had run patient assistance programs and had longstanding relationships throughout the industry, spent another two years pursuing other manufacturers in order to complete the full regimen, known as a drug cocktail, that HIV patients typically required. He won over Abbvie, Gilead, and Johnson & Johnson and, more recently, Mylan.
“These are expensive medications, and once the patient gets on these drugs, they are on them for life,” Trogdon said. “The companies know this. We provide a very streamlined system for a very complicated process, and we have a very high compliance rate.”
He added, “Sure there’s a PR aspect to it for the companies. But it’s also the right thing to do… and they know that, too.”
The thanks from patients naturally go to Harbor Path, which is the face of the help they receive. But behind its ability to help them is a drug industry that spreads out hundreds of millions of dollars of assistance through non-profits and its own programs every year. In 2020 alone, drug companies donated about $35 million worth of medicines to Harbor Path. All of it is processed through a pharmacy it contracts with in northern Kentucky that ships to all 50 states. The medications can be delivered to private homes or homeless shelters, hospitals or health clinics, wherever the recipient can readily and reliably pick it up.
“The populations we serve can be very hard to reach,” Trogdon said. “A lot of our patients are undocumented. We work with clinics that treat a really high percentage of uninsured or underinsured patients. But we’re just a stopgap to getting coverage of some kind. We’re not the solution to the problem of health care in this country.”
Harbor Path’s willingness to assist undocumented workers and their families sets it apart from many other non-profit organizations working in the same sphere. Not surprisingly, this population is among the most hidden and underserved, often going without not just medicines but medical care of any kind. Health insurance isn’t an affordable reality.
Even before the coronavirus pandemic struck, costing millions of Americans their jobs and benefits, the number of people without health insurance was ticking upward. In 2019, almost 30 million went without coverage at some point, roughly 1 million more than the year prior and the third consecutive year to see an increase, according to a U.S. Census Bureau report that is considered the most reliable snapshot of America’s health insurance rates.
Without insurance, or with insurance that comes with a high deductible or co-pays, paying for medications out of pocket can be difficult, if not impossible, for many people. For instance, the name-brand drug Pancreaze, not yet available in generic form, would have cost Stephanie Moore many thousands of dollars by now, had Vivus not donated it to Harbor Path. She takes three pills with every meal, plus one or two with snacks, in order to eat sans excruciating pain. That's more than 3,500 pills a year.
“I am alive, at least I feel alive again, because of Harbor Path,” said Moore, who had what she called “great insurance” before the state of Oklahoma program she worked for was shut down.
Today, patients living with HIV often need to take just one or two drugs to stay healthy. Harbor Path, however, has done the work and can make any of 39 available to them, every single one donated by a drug manufacturer. Still, Harbor Path is meant as a short-term bridge, not a solution, for their lack of insurance. The goal is for patients with HIV to qualify for an AIDS Drug Assistance Program (ADAP), administered through Medicaid, which will then cover future costs of their medications. Virtually all do within 60-to-90 days, Trogdon said.
That’s not the case for many of the patients that Harbor Path serves. The organization has added drugs and devices to treat hepatitis C, cystic fibrosis, diabetes, hypertension and various cancers, among other diseases, to its medicine cabinet. Patients with those are often waiting to get into a pharmaceutical company’s patient assistance program, qualify for a state Medicaid program, or find an organization that helps the indigent or uninsured obtain their medications. As a result, they might rely on Harbor Path for 30 days to six months, at which point their eligibility ends and they are required to reapply.
Full disclosure: No Patient Left Behind, via Boston-based RA Capital Management, heard about Harbor Path’s need for auto-injectors to counteract opioid overdoses in mid-2020 and helped arrange a significant donation of them by the manufacturer. Then it decided to treat Harbor Path to a modernized website and a customer engagement software program called Zendesk to better capture data about diseases, as well as make it simpler to sign up patients, track patients, and get patients their medications – and find patients who are falling through the cracks. The relationship continues to this day.
Peter Kolchinsky, a scientist and managing partner of Boston-based RA Capital Management, which invests in biotechnology, immediately saw the possibilities of expanding Harbor Path’s drug arsenal and of helping it reach patients on the margins or hidden in the shadows. He said he also believes that pharmaceutical companies are responsible for being the backstop, or safety net, for people who need treatment they can’t afford.
“I thought: We’ve got to study how people fell through the cracks and then we have to close those holes,” Kolchinsky said. “As much as possible, Harbor Path needs to be a conductor and get patients to the patient assistance or other programs they need. But when it has nowhere to send them, it needs to be able to help them.”
To streamline that process, No Patient Left Behind, a nonprofit Kolchinsky founded in 2020 to help make medicines affordable for everyone in America, treated Harbor Path to a modernized website and a customer engagement software program called Zendesk. The goal is to better capture data about diseases, as well as make it simpler to sign up patients, track patients, and get patients their medications - and find patients who are falling through the cracks.
Harbor Path currently serves 3,000 to 4,000 patients at any given time, a number that could expand exponentially as the organization starts appealing to individual donors and different sorts of foundations, and makes its presence known to more doctors, clinics and hospitals nationwide. For now, to offset the nonprofit's expenses, Harbor Path has started a small commercial arm that oversees patient assistance programs for drug companies.
“I don’t know exactly what the end game looks like,” Trogdon said. “We’ve been successful because we’ve remained patient compliant, stayed in our lane, and we haven’t tried to be of service to more people than we can be.”
Matthew Patrick, 48, an electrical contractor and project manager who lives in Austin, Texas, says he has been well-served, even saved, by Harbor Path. Like Moore, Patrick suffers from pancreatitis, a disease he openly admits to drinking himself into and that cost him 65 pounds before he found the non-profit.
Patrick has no health insurance, either. Nowadays, he pays a primary care physician a pre-negotiated amount in cash every month, which he says is half the price of a monthly insurance premium but not as good as actual insurance. There is no way he could afford Pancreaze.
“To be blunt, I didn’t think I was going to live,” said Patrick, who was going on two months alcohol free in October 2020 and staying in a sober living home. “I’d gotten so depleted and was in bed for five months before a doctor pointed me toward the right medication, which, obviously, I could afford. I’m here because of Harbor Path. It’s totally changed my view of life.”