Their numbers have dwindled now, with faded yellow newspaper clippings of childhood hospital visits tucked into family scrapbooks. The iron lung, the coffin-like cabinet ventilator that kept many people alive, is a thing of the past, relegated to history books and museums. Some feel that the world has forgotten about them.
Now, polio survivors across the country are reliving painful memories as they watch the events in Washington. The Senate will soon consider nominating Robert F. Kennedy Jr., a fierce critic of vaccines, to be the next secretary of health. And they are keeping a close eye on one of their own, former Republican leader Sen. Mitch McConnell.
It's been nearly 70 years since Dr. Jonas Salk's polio vaccine was declared “80 to 90 percent effective'' against the paralytic form of polio. The government does not keep official numbers, but advocacy groups say there are an estimated 300,000 survivors in the United States. Some people are speaking out after Kennedy's nomination.
Film director Francis Ford Coppola recently recalled his time in the hospital ward. “The hallway was so full of children that stretchers were stacked three or four high.'' Actress Mia Farrow, who was infected when she was 9 years old, posted a photo of a room filled with an iron lung on Instagram with the caption: #Polio. ”
Tennessee Democratic Rep. Steve Cohen, the only polio survivor in Congress, sharply urged the Senate to reject the nomination. “I believe we have a duty to speak up for all those affected by polio, from those with mild symptoms to those who lived and died in iron lungs,” Cohen said in a recent statement.
Trump echoed similar sentiments, telling reporters last month that “I have friends who are still not very well” due to polio. “A lot of people died, but the moment you took the vaccine, the virus was over,” he said. “Dr. Jonas Salk did a great job.”
“I'm all for the polio vaccine,” Kennedy said during a customary courtesy call with senators at the Capitol last month. However, some of his recent statements suggest otherwise. For example, he said the idea that vaccines have dramatically reduced the number of polio cases is a “myth” and “absolutely not true.” He also claimed that the polio vaccine caused an explosion in soft tissue cancers, killing more people than polio.
Attorney Aaron Siri, one of Mr. Kennedy's top advisers, asked the government on behalf of another client to revoke the approval of the standalone polio vaccine and to revoke the approval of 13 other vaccines, including some combination products. They petitioned for a temporary suspension of distribution. This includes the polio vaccine. Katie Miller, a spokeswoman for Mr Kennedy, said: President Kennedy believes that the polio vaccine should be made available to the general public and thoroughly and properly studied. ”
When asked about the concerns of polio survivors, Miller said: “My grandfather had severe polio and half of his face was paralyzed. I still support Mr. Kennedy. The two are unrelated.”
On Friday, the New York Times reported that Mr. Kennedy opposed another important vaccine. In 2021, when thousands of Americans were still dying from the coronavirus each week, he called on the Food and Drug Administration to cancel the use of all coronavirus vaccines.
In interviews, more than a dozen polio survivors unanimously opposed Mr. Kennedy. Some said they were looking for him to spearhead accusations against McConnell's confirmation.
“If Mr. McConnell does not speak out on this issue, it will undoubtedly be a stain on his legacy,” said Susan L. Schoenbeck. In her book, Polio Girl, polio survivor and nurse educator Susan L. Schoenbeck examines the stigma of polio and provides advice for medical professionals who treat it. survivor. “I don't know if the polio survivor community will be able to forgive him.”
Mr. McConnell spoke only in a roundabout way and did not say how he would vote, but he did. Without mentioning Kennedy by name, he warned that anyone seeking Senate consent for the next administration “would be wise to avoid efforts to undermine public confidence in proven treatments.” The senator declined an interview request.
Post Polio Health International, a St. Louis-based nonprofit that promotes “the well-being and independence of polio survivors,” sent a letter to all 100 senators opposing Kennedy.
Brian M. Tiburzi, the group's executive director, said members want Mr. McConnell to speak out more forcefully. “I think people were a little disappointed in his initial statement,” he said. “I think they were hoping he would have taken a clearer position on the RFK nomination.”
At the peak of the polio epidemic in the United States in 1952, the disease sickened nearly 60,000 people, paralyzed more than 21,000, and killed more than 3,000. Many children recovered and lived for decades without symptoms.
But as the population ages, many people now face “post-polio syndrome,” a set of symptoms such as muscle weakness, fatigue and difficulty swallowing that typically appears 35 to 40 years after the initial infection. I will. Some who have been walking for decades have returned to leg braces or wheelchairs. Some people cannot live independently.
Arthur L. Caplan, a bioethicist at New York University's Grossman School of Medicine, was infected when he was 5 years old. He recalls the children he befriended in the polio ward. Some of them were “in separate iron lung realms, and I never saw them again,” which is one of the reasons he went into bioethics. He recovered, but the weakness in his legs returned about seven years ago, he said. His doctor told him the poliovirus was “reawakening.” The 74-year-old now uses a walker to help him balance.
“I always felt that what needed to be heard were the voices of the children who died, the children who did not survive,” he said. “This is a warning to Mitch McConnell about vaccines. I think that's the message they want to send.”
Polio survivors spoke of their passionate support for vaccination, not just for polio, but for all vaccine-preventable diseases. They shared stories of painful memories and personal triumphs.
Gary Irvin, now 87, said he “succumbed to bulbospinal polio (a severe form of paralytic polio)” in 1952 at the age of 14 and “hasn't walked a step since.” . He spent 12 days in an iron lung, then was transferred to a “rocking bed” that tilted from head to toe to help him breathe. He grew up to become an accountant and then realized his dream of learning to fly an airplane.
Evan Davis, who has spent his entire life in a wheelchair, became a lawyer and served as general counsel to New York Governor Mario Cuomo. He said McConnell “certainly has the experience to underline the insanity of putting Bobby Kennedy in charge of America's public health programs.”
Jane Gorenko still has a newspaper clipping from her hometown of Abilene, Texas, about her diagnosis. “First polio case in Abilene,” reads the headline. She said her husband researched her ancestry and identified Mr. McConnell as a distant cousin, but they had never met. She said Mr. Kennedy “should be shut down completely.”
The United States declared polio eradicated in 1979. Currently, there are only two countries where wild poliovirus, which occurs naturally in the environment, is endemic: Afghanistan and Pakistan. The survivors know their ranks are dwindling. Paul Alexander, a lawyer who was one of the last Americans to live in an iron lung for most of his life, died last year.
Some survivors say it is difficult to receive treatment because most American doctors have never seen a case of polio. Dr. Marnie Ulberg, a Denver family physician and polio survivor, runs a polio clinic where she said she has seen about 1,500 survivors since 1985. All of the patients, except those infected overseas, are over 70 years old.
She said she hoped Mr Kennedy's upcoming fight to confirm the infection would shine a spotlight on the needs of polio patients and the importance of vaccination programs. “Vaccines still work. Polio is proof of that,” she said.
In 1991, polio expert Dr. Frederick Maynard and polio survivor Sonny Lawler wrote that there were three categories of polio survivors: “Minimizers” who downplay their own polio experiences. And an “identifier” that encompasses that identity.
McConnell, 82, was infected in 1944 when he was two years old. He detailed his experiences in his autobiography, interviews, and a 2005 speech commemorating the 50th anniversary of the Salk vaccine. In some ways, Mr. McConnell was lucky. He was treated at the Polio Rehabilitation Center in Warm Springs, Georgia, founded by President Franklin D. Roosevelt, the nation's most famous polio victim.
He often speaks of his mother's tenacity and love as the reason for his recovery.
“For two years I was under intense surveillance from my mother,” he said in a 2005 Senate speech. “She did this physical therapy at least three times a day.”
As a former leader, McConnell's voice carries weight with fellow Republicans. If he wishes, the full Senate will have the opportunity to weigh in on Kennedy's suitability when deciding on the nomination. However, Mr. McConnell does not serve on either of the two committees that will hold hearings on Mr. Kennedy's confirmation, the Senate Health Committee and the Senate Finance Committee. A hearing has not yet been scheduled.
But bioethicist Dr. Caplan said polio survivors will be watching when the hearing takes place, “and there will be a lot of ghosts in that hearing room.”
