Just before the global spotlight fell early this month on the world’s best and healthiest athletes in Paris, Olympic attention turned to another kind of star performer, in this case one who suffers from a rare neurological disease, SDS: Céline Dion. Needless to say, celebrities who confide such health challenges — not only Dion but Michael J. Fox (Parkinson’s), Dame Judi Dench (macular degeneration), Patti LaBelle (diabetes), and the late Tony Bennett (Alzheimer’s) — deserve special gold medals just for raising awareness of conditions once regarded as unmentionable, as well as incurable.
Credit stem cell research with overhauling the conversation — and the prognosis. The advanced research made possible by stem cell study now offers real promise in conquering conditions long believed hopeless. That is, if we can increase funding to conduct this crucial work.
Stem cells are no longer controversial. For years they could be harvested only from human embryos. Right or wrong, their extraction for research remained severely limited for decades. But now, the cells can be created from a mere blood sample or a simple skin scraping. With increased access to stem cells, scientists can now pursue what we call precision medicine: warp-speed research in search of life-extending treatments for once-unconquerable diseases. And these individualized miracle cures can be tailored to a patient’s unique genetic make-up.
Our city has become the epicenter of this accelerated research. It’s exactly what we champion at the New York Stem Cell Foundation.
The goal of our research is to give these self-renewing cells the capacity to treat our most terrible afflictions: not only Alzheimer’s, macular degeneration, diabetes, and Parkinson’s, but cancer, heart disease, ALS, and MS. And not only one-size-fits-all remedies, but individualized cures. That last part is especially important because we now know that the risk of disease and the effectiveness of drugs can vary widely among people.
And therein lies an extra challenge. The future of stem cell medicine depends on researchers having access to biobanks — large collections of health information drawn from many stem cell donors. Unfortunately, existing biobanks simply don’t yet reflect the diversity of the world’s population. Universal progress won’t happen until the banks contain the genetic variations of all humankind.
What caused this lack of diversity? It’s the product of a longstanding bias in medical science, which for decades has tipped the scales in favor of white males. With rare exceptions, women, minorities, and people from developing countries have been excluded in collecting samples and conducting studies.
That’s unacceptable. People of different gender and ancestry react differently to diseases, medicines, and treatments. Two-thirds of Puerto Rican children, for example, do not respond to the drugs used in asthma inhalers. Up to 75% of Pacific Islanders are unable to convert a common anti-platelet drug into its active form to prevent blood clots.
And doctors experimenting with a promising new Alzheimer’s drug still have little information on how it might work for people of color. According to one report: “In the pivotal clinical trial for the drug [Leqembi], Black patients globally accounted for only 47 of the 1,795 participants — about 2.6%. For U.S. trial sites, the percentage was 4.5%” — although Blacks make up more than 13% of the U.S. population.
We’re on the threshold of history-making medical innovations — but the full potential can’t be realized until the biobanks are expanded.
At our Stem Cell Research Institute, we propose to add to our Diversity Biobank a variety of “biological avatars” from under-represented populations. To be precise, our goal is the addition of thousands more cell lines from people in these communities.
The creation of such a comprehensive stem cell bank will help our scientists better understand diseases across all populations. Only then can we design therapies for all.
This won’t happen in a vacuum. Generous private donors are stepping up, but the federal and state governments must also prioritize the building of diverse cell banks and devote more funds to that goal. For years, Albany provided a fund for stem cell research, NYSTEM, but the program has been all but dormant and is scheduled to sunset next year. Instead, it needs not only to be renewed, but expanded to meet the huge new opportunities made possible by stem cell-based precision medical research.
Together, public and private generosity can transform the future of medicine. We can make life longer and healthier for countless millions around the world — not only the courageous celebrity victims of these stubborn afflictions, but our own loved ones, too.
Raab, who was president of Hunter College for 22 years, joined the New York Stem Cell Foundation in January 2024 as president and CEO.