To the Editor:
Re “Why Can’t More Children Get the Treatment That Saved My Son’s Life?,” by Elizabeth Currid-Halkett (Opinion guest essay, Feb. 24):
Our three children, ages 5 and 7, battle a rare, relentless and ultimately fatal disease called cystinosis. We recently found hope in the initial phase of a gene therapy clinical trial that was shown to be safe and yielded very promising results — a therapy that could one day save our children’s lives. Our biggest fear is that it will not be accessible to them or others in desperate need.
Dr. Currid-Halkett beautifully articulated the fears of parents like us, who find hope in the promise of new therapies but face, as she said, “roadblocks that prevent more families from gaining access to these new treatments,” including “dissent over how flexible regulators should be in interpreting clinical trial results and taking qualitative improvements into account.”
She cites Dr. Peter Marks, the director of the F.D.A.’s Center for Biologics Evaluation and Research, for recently making a courageous call for the approval of Elevidys, a treatment for patients with Duchenne muscular dystrophy. We applaud Dr. Marks’s wisdom and perspective. However, the F.D.A. reviewers’ initial rejection is a cautionary tale of how patient access to lifesaving therapies could be impeded by a narrow interpretation of efficacy.
We implore the F.D.A. to consider what Dr. Currid-Halkett calls “a more flexible view of treatment efficacy without losing focus on safety.” Specifically, this lens should be applied to the way outcomes are measured, including quality of life improvements, to avoid denying lifesaving treatments to all patients in need.
For example, if a 1-year-old who receives a gene therapy treatment is cured of their disease and a 10-year-old who receives the same treatment isn’t cured but is granted a longer, healthier life as a result, should we not make treatment available to both of them?
Every child with a life-threatening disease deserves a fighting chance. We hope the F.D.A. agrees. The lives of our three children depend on it.
Erin Finucane
Erin McCarthy
Carli Beckett Simpson
Regulating Content on Social Media
To the Editor:
Re “Justices Mull State Laws Constraining Social Media” (Business, Feb. 27):
Conservative politicians need to get their story straight regarding the regulation of social media platforms. At the end of January Republicans, such as Senator Josh Hawley, were demanding that Meta’s C.E.O., Mark Zuckerberg, apologize to parents for failing to protect children from harmful content.
However, this week conservatives from Texas and Florida argued that social media platforms should not be able to choose what content goes onto their platforms; the states believe that social media should have to publish all messages, regardless of the content.
Luckily, the justices of the Supreme Court seemed skeptical of the two states’ laws, which would open the floodgates of misinformation, hate speech and unimaginably harmful speech that could lead to suicide, eating disorders and even terrorist attacks.
If we want a society in which people are protected from harmful information and government censorship, we have to allow (and even demand) that private social media companies continue to develop strict guidelines that determine what is proper or improper to put on their websites.
Of course those guidelines should not censor views based on politics, but on whether the information is truthful and whether its potential harm outweighs its benefits. These decisions are not always easy, but newspapers such as this one do it every day.
Adam Michels
San Francisco
To the Editor:
It is curious that the same states arguing for uncensored access to social media platforms regularly ban library books on the slightest provocation. The Supreme Court should take note.
To the Editor:
Re “U.S. Imposes Sanctions Targeting Russia’s Finance and Defense Sectors” (news article, Feb. 24):
There are few if any situations in which sanctions on major adversaries have been effective.
There are three primary reasons Western sanctions have always been porous: Politicians (from both the United States and its allies) don’t want their voters to be inconvenienced by supply shortages or price escalation (e.g., oil). Big business wants to keep making profits from sales to our adversaries (working through intermediaries). Diplomats don’t want to harm the civilians living among our adversaries (nothing to inconvenience or endanger them).
There always seems to be a new tier or wave of sanctions to announce when earlier attempts have failed. Weak sanctions are an exercise in futility — simply pure theater for the local audience.
Ron Kurtz
Alpharetta, Ga.
Republicans, Christians and I.V.F.
To the Editor:
Re “Lawmakers in Alabama Move to Protect I.V.F.” (front page, Feb. 24):
It’s amazing to see how fast Republican legislators acted when they realized that they could lose the next election if they didn’t change their minds on I.V.F.
Maybe the right-wing legislators in Congress will see Alabama and change their thinking — or the voters will change their legislators who don’t listen. There’s still time to learn, Mike Johnson!
William Hoelzel
Weatogue, Conn.
To the Editor:
Re “For Christians, I.V.F. Presents a Moral Divide” (front page, Feb. 26):
Christians are free to do whatever they choose with their own bodies, but they must never try to mandate what others do with theirs.
Christian theology is not at the heart of our Constitution. Indeed, our founding fathers made clear the importance of separating church and state. No judge or legislator should ever attempt to dictate what anyone may or may not do with his or her body. That is the true meaning of liberty.
Eli Sadownick
Manchester Township, N.J.
A House Full of Memories
To the Editor:
Re “The Deep Joy of Squirreling It All Away,” by Margaret Renkl (Opinion guest essay, nytimes.com, Feb. 12):
We are moving out of our home of 38 years — a home we have lived in as our children grew up and both sets of our parents (in different states and times) died. The house is filled with all of their memories, and because we have a basement and an attic, also filled with their physical “stuff.”
One of the hardest parts has been sorting through photos and no longer having anyone to ask who the subjects are. It’s been a wonderful chance to relive happy times, but also a horrible sense of guilt when we have had to decide what must be discarded as we move to a small apartment.
Ms. Renkl’s article perfectly articulated our feelings.
Jennifer Smith
Scarsdale, N.Y.