Only in America: Desperate patients raise billions in online donations to pay for crushing medical costs

gofundme-300x130Modern medicine may be providing patients with significant improvements in key treatment areas, but the cost of care has become so crushing that online campaigns for charitable medical aid have become heartbreakingly common in the United States.

A team of researchers from institutions across the country reported that the well-known GoFundMe website, between May 2010 and December 2018, had provided a platform for more than 1 million aid appeals — with 281,881 of these (26.7%) created to cover individuals’ health care–related costs.

Most of the fund-raising sought to assist cancer patients, with individuals suffering trauma and injuries, or neurological disorders trailing in number of campaigns. As the authors observed in their published study of these pitches:

“[M]ore than $10 billion was sought through online medical fund-raisers in the U.S., with more than $3 billion raised … Cancer therapy is expensive, and out-of-pocket costs for newly diagnosed patients with cancer frequently represent 23% to 63% of their household income. Our study suggests that many patients are using online fund-raisers to cope with the high financial burden due to cancer. This study had some limitations. Although our study does not contain patient-specific clinical data and included only one fund-raising platform, thereby representing the lower bound on the true use of such mechanisms, it highlights a unique aspect of financial toxicity of health care. Online fund-raising to cover health care–related expenditures has grown substantially over the past years. These results highlight how many people are relying on the charity of others for raising money to cover health care costs.”

Harlan Krumholz, a doctor and Yale health policy expert, commented more explicitly on social media about the study’s findings, arguing:

“With miracle breakthroughs in cancer come increasingly untenable costs that often, in part, accrue to the person who is sick. Often with their job interrupted. Often with other responsibilities. Often without a big bank account. Numbers asking for donations growing … is that who we are? We are forcing people to rely on charity to pay their medical bills. And many go bankrupt. Many leave bills for their loved ones. Many are distraught. Many have no other options. Time to re-consider this system that punishes those who are ill.”

A big dip in cancer death rate

The research on online pleading for help with staggering medical costs came even as other experts pushed out what might be good news about cancer: The Wall Street Journal, citing the American Cancer Society, reported that “the death rate from cancer in the U.S. dropped 2.4% from 2017 to 2018, the biggest single-year decline on record and a sign of new treatments on lung cancer especially.”

The newspaper added this of the latest trends with one of the nation’s leading disease killers:

“It was the second year in a row with a record-setting drop, and the progress continues gains that have been made for more than a quarter-century, the cancer society said in a report published [Jan. 12]. The researchers analyzed cancer mortality data from 1930 to 2018, before the start of the Covid-19 pandemic. Overall, the cancer mortality rate has fallen 31% since its peak in 1991 … ‘To see these continuing record declines in cancer mortality is very encouraging,’ said Rebecca Siegel, senior scientific director of surveillance research at the American Cancer Society and lead author of the report. Despite the gains, cancer remains one of the nation’s biggest killers: the second leading cause of deaths in the U.S., after heart disease. In 2018, it was responsible for more than 599,000 deaths …”

Deborah Schrag, chief of population sciences at Dana-Farber Cancer Institute in Boston, told the Wall Street Journal that caution should still be the byword with cancer, saying, “We have a lot of good progress . . . but we shouldn’t declare victory.” The newspaper noted that inroads occurred with the disease’s mortality for notable reasons:

“The gains since 1991 are primarily because of reductions in smoking and improvements in early detection and treatment, the [cancer society] report said. Mortality rates dropped for the most common cancers — lung, breast, prostate and colorectal — and drove the overall rate downward. Strides in lung-cancer treatment have accelerated the overall decline in recent years, Ms. Siegel said. Lung cancer, often caused by smoking, is the deadliest in the U.S., accounting for almost one-quarter of the country’s cancer deaths. Over the past several years powerful new lung-cancer treatments have emerged, particularly agents that target specific cancer cells.”

The staggering cost of cancer care

Such treatments, as I have noted, can come at sky-high prices. Dr. Barry Kaplan, a community oncologist and Ph.D., has written on an information site for medical specialists, reporting of certain lung cancer care:

 “The drugs prescribed in targeted therapy treatment are often prohibitively expensive. Monthly averages of $5,000 to $10,000 and annual totals over $100,000 are common. Orphan drugs, which are used to treat ‘rare’ diseases, can cost $300,000 or more per year, however. Some patients will need to take these expensive drugs for the rest of their lives. Although many patients turn to patient assistance programs and foundations for help with drug costs, the availability of these mechanisms for covering drug costs is decreasing. The increased use of targeted therapies and the ever-rising drug costs make the current system unsustainable. If patients are to survive, reform is vital.”

Indeed, Vinay Prasad, a doctor and healthy policy researcher who has focused on cancer care and its costly prescription drugs, has argued in his recent book “Malignant,” that oncology has been flooded with too many treatments that are over hyped, overpriced, and under-performing. He wrote in the book:

“For the most part, cancer drugs cost too much and deliver too little. Because of this, their value is poor.”

In a recent interview, he elaborated:

“[I]t’s easy to fixate on the exceptional stories in cancer medicine, a drug called Imatinib, which has really revolutionized the disease, chronic myeloid leukemia. Some other really successful drugs are, like, Rituximab and Trastuzumab. And I think it’s easy and natural to gravitate to the success stories. But if you … look empirically and broadly at many, many cancer drugs, you will find that they offer very marginal or modest benefits. [Consider the findings of a] … paper by Fojo and colleagues in JAMA Otolaryngology. They looked at 71 consecutively approved drugs for solid tumors. What they found is that the median improvement in overall survival is 2.1 months. So, I think many of us will recognize that 2.1 months is a marginal or modest improvement in survival. And that’s the median. That’s the typical drug. And you pair that with drug prices that are often $12-, $14-, $16,000 per month of treatment for drugs taken indefinitely that are not curative, and you get value propositions that are quite poor.”

In my practice, I see not only the harms that patients suffer while seeking medical care, but also their struggles to access and afford safe, efficient, and excellent health care. This has become an ordeal due to skyrocketing cost, complexity, and uncertainty of treatments and prescription medications, too many of which turn out to be dangerous drugs.

We can both applaud the altruism that undergirds online charitable fund-raising for medical needs, while making pointed inquiries as to what in heaven’s name is going on in health care that patients have faced, in one small slice of study, a $10 billion shortfall in their finances for medical treatment. Health care should be a right, not a privilege. It should not bankrupt patients and their families, already struggling with catastrophic illness or injury. We’ve got a lot of work to do to see that the health care system, on which the nation spends more than $3 trillion annually, works much, much better for us all.

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