Funding Community
Comparing the differences in myeloma between today and three decades ago, the most important is that a myeloma community existing at all. It’s important to understand why. Back then, about 20,000 Americans were living with myeloma and few knew another patient.
According to the National Cancer Institute (NCI), in 1995 just under 12,000 Americans, or 4.5 per 100,000 persons, were diagnosed with myeloma. Of those, about three-fourths would not survive more than five years. And for most of them, it would be closer to two years or less.
How could the International Myeloma Foundation (IMF), the first myeloma patient organization, survive with such a small constituency? Especially when young medical school graduates rarely even thought about it as a career field?
But, as we will continue to see in future articles, things were changing, easier to see in retrospect than it was then.
When it comes to financial support, as important as grassroots contributions are to maintain infrastructure for any disease-focused organization—more diverse sources are needed in order to do more things. Occasionally wealthy individuals with a personal connection can make significant impacts. That was not, however, a plan.
The most natural sources were pharmaceutical companies that had—or would have—products to sell to diagnose and treat specific diseases. Pitching positive news to patients who rarely had any became valuable, both to patients and drug manufacturers. More success against myeloma could bring potential new sponsors.
In the mid-90s, Novartis’s first approved bisphosphonate, pamidronate, known commercially as Aredia, hit the market. Myeloma came first. Information needed to get to the right people. How could they be identified? Who would pay for it? Although very few recognized it, a community was being created.
The timing of Aredia’s approval was fortuitous for the IMF. Novartis began looking for opportunities to sponsor patient programs. There seemed to be little-to-no conflict. Given the state of the disease at the time, not educating myeloma patients about Aredia would have been a dereliction of the IMF’s duty whether they got support from Novartis or not.
Putting together complimentary informational packets filled with photocopies to myeloma patients all over the world who felt isolated comes at a cost. Individual donations or fundraisers are essential, but corporate money is its lifeblood. Pharmaceutical and emerging biotech companies had reasons to support mutually beneficial programs and projects. Without independent financial resources, any similar organization could not survive without industry support.
One important difference between then and now is the role patients take in educating their doctors. In an age when specialists were few and far between and few treatment choices existed, new approaches to marketing included having patients ask their physicians to consider prescribing certain drugs for them. Sometimes it seemed some patients knew as much or more than their physicians. It was a different type, so to speak, of traditional professional medical continuing education for physicians.
Today, even though misdiagnosed patient stories are still common, they are lessening. Specialists—or at the very least, well-versed hematologist-oncologists—are much more easily found, although some parts of the country and society remain underserved.
Another unknown in the early-to-mid-90s was the internet. To get a better picture, consider this: on January 20, 1993, the day President Clinton was first inaugurated, only fifty or so pages existed. Period. No one knew what the internet was.
People still mostly did things by phone and mail; faxes were more common and still considered by some to be exotic. Computers were expensive, bulky, and still novelties to most.
Phones and mail were essential to creating the IMF. The hotline and information packs were becoming essential to patients and their loved ones around the world; the first signs of hope they would feel since the news of a diagnosis. With new funding and more companies investing to enter the myeloma market, they could think about ideas like those of Mike Katz to create a website, something that would be essential in the 21stcentury.
Pharmaceutical advertising is woven into the fabric of American popular culture and economic life. This is indisputable. The Prescription Drug Marketing Act of 1987 made it legal for companies to pitch their medications directly to patients, creating annoying advertising ear worms.
In my experience, doctors who come to the U.S. for medical meetings are generally astounded by the drug commercials they see when flipping channels in their hotel rooms at the end of the day. Nothing similar exists in their countries. (Unless they’re from New Zealand or have regular access to American media.)
In 1995, Aredia was the first drug to target the most common effect of myeloma, and only the second new drug used in myeloma since 1962. In the past quarter century, more drugs have been approved in myeloma than for any other disease.
If statistical trends are correct and continue, then it is reasonable to assume more than 200,000 Americans are living with myeloma today. That could be as high as 300,000 within a decade.
In the most recent NCI annual statistics, about 35,000 patients, seemingly almost two-thirds more than 1995, will have been diagnosed with myeloma in the past year. Some, but not all, of that can be attributed to a growing population. The U.S. has added more than 75 million people to its population in the past 30 years.
Myeloma incidence will go up, survival will be longer, and more drugs are in development. These can and will likely be costly, even for those with health insurance. Very costly.
I don’t have the answers. I hope to illuminate and question why in the coming months.
Photo: Detail, Xiaoze Xie, April-May 2002, Shanghai #1 (2002), Toledo Museum of Art