To the editor: Visitor contributors Euan Ashley and Rachel Keranen made a compelling case for NIH grant funding as a invaluable, confirmed funding (“Slashing NIH research guarantees a less healthy, less wealthy America,” Could 28). I’m dwelling proof that that is true.
At 74, I stay every day below the shadow of Alzheimer’s. My mom started dropping her reminiscences in her late 60s, and I’m genetically predisposed to the identical destiny. But as we speak I stay mentally sharp, maybe because of an experimental weekly dose of 6 mg of rapamycin.
This drug isn’t permitted for Alzheimer’s, however in my case, it appears to be working. I’ve seen firsthand how promising therapies can supply valuable further time of readability. Nonetheless, I fear each day that the advantages will cease, that unwanted side effects will emerge or that others received’t qualify for these trials in any respect. That worry is crushing and it’s shared by hundreds of thousands of People who carry the identical genetic dangers.
We’ve waited far too lengthy for progress. It took a long time for as we speak’s experimental medicine to succeed in human testing, and plenty of by no means make it to approval. Obstacles to medical trials and off-label entry go away households scrambling for hope.
I urge our lawmakers to behave now: Improve federal funding in Alzheimer’s analysis, streamline compassionate-use pathways for experimental remedies and guarantee Medicare and Medicaid cowl revolutionary therapies. We can’t afford to decelerate. Each day of delay prices valuable reminiscences and valuable lives.
Brian Valerie, Dana Level
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To the editor: The cutbacks in analysis funding have hit me arduous as I fear about most cancers sufferers in the USA who will finally pay the value. I’ve already heard from sufferers whose medical trials have been shut down, impacting one 4-year-old childhood leukemia affected person who will now doubtless lose his life.
I used to be a most cancers affected person combating an incurable type of non-Hodgkin lymphoma from 2006 till 2018. Recognized on the age of 46, I used to be in steady therapy till age 58. My son was in kindergarten once I was recognized and spent his total Ok-12 years with a sick mother.
In 2012, once I was on my fifth therapy line, I heard a few part 1 medical trial on the Nationwide Institutes of Well being/Nationwide Most cancers Institute of a breakthrough individualized remedy referred to as CAR T (chimeric antigen receptor T-cell remedy) for my kind of most cancers. The trial included solely 17 sufferers, however the outcomes had been astonishing. Seventy-five % of sufferers achieved long-term full remission.
I used to be decided to remain alive to obtain CAR T remedy and in 2018, I used to be capable of enroll in a part 2 medical trial of this remedy at UCLA. In only one month, it put me in a whole remission, one thing that none of my six earlier therapies completed.
On July 16, I’ll rejoice my seven-year CAR T birthday and thank my fortunate stars for the NIH and the analysis funding that saved my life. And that little boy who was in kindergarten once I was recognized is now 25 years outdated.
Laurie S. Adami, Los Angeles
