Letters to the Editor: Two impassioned pleas from Californians who’ve benefited from experimental treatments

To the editor: Guest contributors Euan Ashley and Rachel Keranen made a compelling case for NIH grant funding as a valuable, proven investment (“Slashing NIH research guarantees a less healthy, less wealthy America,” May 28). I’m living proof that this is true.

At 74, I live each day under the shadow of Alzheimer’s. My mother began losing her memories in her late 60s, and I am genetically predisposed to the same fate. Yet today I remain mentally sharp, perhaps thanks to an experimental weekly dose of 6 mg of rapamycin.

This drug isn’t approved for Alzheimer’s, but in my case, it seems to be working. I’ve seen firsthand how promising therapies can offer precious extra time of clarity. Still, I worry every day that the benefits will stop, that side effects will emerge or that others won’t qualify for these trials at all. That fear is crushing and it’s shared by millions of Americans who carry the same genetic risks.

We’ve waited far too long for progress. It took decades for today’s experimental drugs to reach human testing, and many never make it to approval. Barriers to clinical trials and off-label access leave families scrambling for hope.

I urge our lawmakers to act now: Increase federal investment in Alzheimer’s research, streamline compassionate-use pathways for experimental treatments and ensure Medicare and Medicaid cover innovative therapies. We cannot afford to slow down. Every day of delay costs precious memories and precious lives.

Brian Valerie, Dana Point

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To the editor: The cutbacks in research funding have hit me hard as I worry about cancer patients in the United States who will ultimately pay the price. I have already heard from patients whose clinical trials have been shut down, impacting one 4-year-old childhood leukemia patient who will now likely lose his life.

I was a cancer patient fighting an incurable form of non-Hodgkin lymphoma from 2006 until 2018. Diagnosed at the age of 46, I was in continuous treatment until age 58. My son was in kindergarten when I was diagnosed and spent his entire K-12 years with a sick mom.

In 2012, when I was on my fifth treatment line, I heard about a phase 1 clinical trial at the National Institutes of Health/National Cancer Institute of a breakthrough individualized therapy called CAR T (chimeric antigen receptor T-cell therapy) for my type of cancer. The trial included only 17 patients, but the results were astonishing. Seventy-five percent of patients achieved long-term complete remission.

I was determined to stay alive to receive CAR T therapy and in 2018, I was able to enroll in a phase 2 clinical trial of this therapy at UCLA. In just one month, it put me in a complete remission, something that none of my six previous therapies accomplished.

On July 16, I will celebrate my seven-year CAR T birthday and thank my lucky stars for the NIH and the research funding that saved my life. And that little boy who was in kindergarten when I was diagnosed is now 25 years old.

Laurie S. Adami, Los Angeles