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Lawmakers spar with NIH director over vaccine rhetoric, racial equity
NIH Director Monica Bertagnolli was pressed by the House Appropriations Committee on a variety of issues.
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Why voters chose to protect abortion and vote for Donald Trump, according to experts
Four states protected abortion rights but also voted for Donald Trump, which experts chalk up to voting situation, other worries
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NASA’s Parker Solar Probe Completes Final Venus Flyby
The probe used Venus’ gravitational pull to alter its trajectory, preparing it for an approach to the solar surface in December.
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What states will have abortion on the ballot this year?
Here’s a breakdown of the 10 states that have abortion referendums on the ballot on Tuesday, and what it means for access to reproductive care.
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Point by Point – Episode 3: Costs vs. Access – The Diverging Health Care Paths of Trump and Harris
This week on Point by Point, we explore the contrasting health care policies of Donald Trump and Kamala Harris, and how their approaches may impact people’s medical care.
read moreHealth care professionals call on Trump to release medical records
WASHINGTON – More than 200 doctors and nurses are calling on former President Donald Trump to release his medical records, citing concerns over his age and fitness for office as he campaigns for a potential second term that would make the 78-year-old the oldest president-elect in history.
So far, Trump has resisted their pressure.
Dr. Ezekiel Tayler, a critical-care physician from Pennsylvania, was among the 238 signatories of a letter from Doctors for Harris, an independent grassroots organization that is not affiliated with the Harris-Walz campaign. He said he signed the letter because he believes anyone running for America’s highest office has a responsibility to be upfront with voters.
“I think what Donald Trump has done is normalize a lack of transparency, saying: ‘I can do whatever I want, whenever I want to do it, and if you don’t like it, well, I am who I am’ and that’s not appropriate,” Tayler said.
The letter, which was dated Oct. 13, noted that without a disclosure of health data, doctors and voters are forced to draw conclusions from Trump’s behavior during public appearances. They said that in that regard, “Trump is falling concerningly short of any standard of fitness for office and displaying alarming characteristics of declining acuity.”
Trump’s history of health disclosure controversy
When Hillary Clinton’s campaign published her detailed medical report over a year before the 2016 election, Trump faced pressure to follow suit.
In a December 2015 tweet, he said he’d release a full medical report that would “show perfection.”
Ten days later, his personal doctor issued a four-paragraph letter that included no specific health statistics, but claimed that Trump “will be the healthiest individual ever elected to the presidency.” It was later revealed that Trump had dictated this letter and his doctor simply signed it.
In 2020, Trump tested positive for COVID-19 after Justice Amy Coney Barrett’s Supreme Court confirmation on September 26 but waited until October 2—three days after a presidential debate with Joe Biden—to announce it. This detail came to light a year later after Trump’s former chief of staff, Mark Meadows, published it in his 2021 book.
Health concerns grow ahead of the election
Now, in lieu of publishing an updated medical report, as Trump promised he would do in an August 2024 interview, his campaign issued a statement citing two July memos from former White House physician and current Texas congressman Dr. Ronny Jackson, who treated the former president after he was shot in an assassination attempt this summer, as proof that Trump is fit for office.
“I want to receive a solid health report, not from the doctor who examined him last time—who had his own issues—but from a respected physician, so I can comprehend what is happening with him,” said Pat Ford-Roegner, a nurse practitioner and member of Nurses for America, a group that started working with Doctors for Harris earlier this year.
Ford-Roegner said that she believed the “level of anger” Trump is displaying in his recent public appearances is the most alarming aspect of his behavior. The Doctors for Harris letter cited similar worries.
“As we age, we lose our sharpness and return to basic instincts. We are witnessing this with Trump, as he utilizes his rallies and appearances to ramble, meander, and crudely lash out at his numerous perceived grievances,” the doctors wrote. They pointed to his recent claim that Haitian immigrants are eating pets in Ohio as a specific example.
In the week after the letter, Trump took the stage at a town hall in Pennsylvania, where he danced and swayed to his personal playlist for nearly 40 minutes after abruptly ending the Q&A portion of the event. Dr. Mark Lopatin, a retired rheumatologist who also signed the letter, highlighted this as another cause for concern.
“The public deserves to know what’s going on,” Lopatin said. “So I think anytime someone is not being transparent we should call that out.”
FDA and NIH discuss smoking cessation practices, reviving e-cigarette debate
WASHINGTON –The Food and Drug Administration and National Institutes of Health analyzed practices for reducing tobacco consumption, including switching from traditional cigarette use to e-cigarettes, at a joint public meeting on smoking cessation on Monday.
“We’ve made real progress in reducing cigarette smoking in the U.S., which is a notable public health achievement,” said FDA Commissioner Dr. Robert Califf. “While this progress is encouraging, we still have much more work to do, including addressing disparities in the types of products being used and who is using them.”
The meeting’s topics ranged from medications like Bupropion and Varenicline, which help people quit by reducing nicotine withdrawal symptoms, to new apps designed to coach people through smoking cessation.
The nation’s top tobacco cessation doctors also acknowledged that e-cigarettes are considered less harmful than standard cigarettes and could be a key pathway toward smoking cessation. But experts warn that vaping is not a risk-free alternative.
Vaping disperses toxic chemicals and heavy metals throughout the lungs, causing inflammatory injury and increasing risk for EVALI, or e-cigarette or vaping use-associated lung injury. Dr. Alejandra Ellison-Barnes, an assistant professor of general internal medicine at Johns Hopkins Hospital, works in a tobacco clinic, and says she encourages her clients to stop using tobacco products of any kind, including vapes.
“The important thing with e-cigarettes is that, because they’re relatively new, we don’t yet have a good body of evidence for the effects, both short term and long term,” Dr. Ellison-Barnes said. “It’s really a harm reduction and not a harm elimination strategy when you’re talking about e-cigarettes.”
Tobacco Industry and Campaigns
The smoking cessation meeting comes as e-cigarette use has been a recent campaign platform for presidential candidate Donald Trump, signaling what he may promote if elected. Trump vowed on Truth Social last month to “save vaping again” if elected, following a meeting with the Vaping Technology Association, a prominent vaping lobbyist.
Trump’s recent enthusiasm for vaping diverges from the stance of his previous administration, which raised the age requirement for purchasing e-cigarettes from 18 to 21 in 2019 and enacted a limited ban on fruit and mint flavored e-cigarettes in 2020. Both actions aimed to crack down on the widespread use of vapes among youth, since 1.63 million middle and high school students currently use e-cigarettes, according to CDC data.
The tobacco industry has backed Trump’s campaign, too. A subsidiary of the second leading tobacco company in the U.S. has donated $8.5 million to Make America Great Again Inc., the main super PAC for the Trump campaign, according to Open Secrets. The subsidiary, RAI Services Company, is the top corporate donor to the Trump-supporting super PAC. Vice President Kamala Harris’s campaign and the super PACs supporting it do not appear to have received donations from RAI Services Company.
“Cigarette smoking among adults has been cut in half since 2009, when the FDA gained the authority to regulate these products,” said Dr. Califf.
Yet smoking still kills nearly half a million U.S. residents each year, and financial support from the tobacco industry threatens to undo the progress that has already been made.
“I think any time there is industry money in politics, it’s a concern from a public health perspective,” Dr. Ellison-Barnes said. “Regardless of the administration, I think anytime there’s tobacco money mixed in, it’s definitely a public health concern.”
Disproportionate Impact
Smoking rates are concentrated in vulnerable populations like minority communities and those experiencing mental illness, and setbacks in smoking cessation could mean further disproportionate effects for these populations.
Dr. Lonnie Nelson, an associate professor at the Washington State University College of Nursing and a descendant of the Eastern Band of Cherokee Indians, spoke at Monday’s meeting. Dr. Nelson explained how the tobacco industry specifically targets Native Americans for consumption.
“American Indian and Alaska Native communities have the highest prevalence of commercial tobacco smoking of any racial or ethnic group in the U.S. We experience dramatic health disparities resulting from this fact,” Nelson said. “There is a need for efficacious and accessible interventions.”
An update on bird flu in the U.S.
WASHINGTON – A third case of bird flu was confirmed in California on Wednesday by the Centers for Disease Control and Prevention, following two other cases confirmed in the state last week. Two additional presumed cases are awaiting verification.
Wild birds, which are considered reservoirs for the virus, shed avian influenza and infect both poultry and dairy cows. According to CDC data, 295 herds of dairy cows have been infected, and 14 states have seen outbreaks in cattle. 100,781,821 poultry have been infected as of Oct. 8.
Humans who come in contact with these animals, especially dairy workers, are at risk of infection. This most recent case is the 17th instance of bird flu, a strain of influenza A known as H5N1, in the United States since March 2024.
The three known infected Californianians are dairy workers who were exposed to infected dairy cattle. Each case stemmed from a different farm, and patients reported mild symptoms. Typically, patients infected with the virus will experience respiratory symptoms, similar to the seasonal flu, or eye redness and irritation. But illness can range in severity from mild symptoms to severe symptoms that are fatal, according to the CDC.
There has been no evidence that the virus can spread between humans, but a patient in Missouri without known contact with animals was diagnosed with avian flu last month. One member of the patient’s household and six health care workers who came in contact with the patient subsequently developed symptoms of bird flu, the CDC said. The patient’s household member did not test for avian influenza, and one of the symptomatic health care workers tested negative, though the test was done after the ten-day testing window had elapsed.
Currently, experts are not concerned about human-to-human transmission. “At the present time, the risk to humans is really almost entirely limited to dairy workers,” said Dr. Dean Blumberg, Professor and Chief of Pediatric Infectious Diseases at UC Davis Health.
Blumberg says the concern lies in the risk of the virus mutating.“If the strains mutate, then there can be a risk of it mutating so there’s more human-to-human transmission. And then, instead of the infection risk being confined to the dairy workers, it could enter into the general population.”
So far, mutations have been limited. The Food and Drug Administration discussed avian influenza at its Meeting of the Vaccines and Related Biological Products Advisory Committee on Thursday.
Dr. Todd Davis, Acting Chief of the Virology, Surveillance, and Diagnosis Branch of the CDC, expressed optimism at the meeting. “These viruses thankfully have remained relatively genetically stable. We’re not seeing changes that impact increased infectivity or that would be predicted to yield increased transmissibility among people.”
Also discussed at the FDA Advisory Committee meeting was pandemic influenza preparedness and the progress that has been made on vaccine development.
Dr. Christine Oshansky spoke about the work of the Biomedical Advanced Research and Development Authority (BARDA) and its advanced production of vaccines for avian influenza. “We work with CDC and other WHO collaborating centers and we are monitoring the surveillance very closely of the animal viruses that are circulating around the world,” she said.
“I think it’s important for the FDA to be reviewing the avian influenza vaccines,” Dr. Blumberg said. “That’s a forward-thinking step. But at the present time, I think the major focus needs to be on surveillance of the dairy herds. We still have very little data about the prevalence of avian influenza within dairy herds, and part of that is because in most states, it’s voluntary for ranchers to allow their herds to be tested.”
Dr. Maurice Pitesky, Associate Professor at the UC Davis School of Veterinary Medicine-Cooperative Extension, expects that the virus is here to stay.
“It’s affecting so many different geographies and species that we’ve never detected it in before, and now we’re also finding it in human wastewater,” he said. “It’s the largest animal outbreak of disease we’ve ever had in the 5000 to 7000 years of domesticated agriculture. It’s significant, and it’ll probably continue to be that way.”
New Forever stamp honors health care workers
WASHINGTON — The United States Postal Service and the Department of Health and Human Services jointly launched a new Forever stamp honoring health care workers at a dedication ceremony on Thursday. The stamp became available for sale on Tuesday, October 1st and features the words “thank you” spelled out in various health-related icons. The words “healthcare community” run across the lower right corner of the stamp.
The health care community includes physicians, nurses, pharmacists, hospital custodians, lab technicians and epidemiologists, among others. USPS and HHS’s decision to honor health care workers comes in the wake of the Covid-19 pandemic, during which those in health care worked long hours taking care of those ill with the virus.
Xavier Becerra, secretary of the Department of HHS, spoke at Thursday’s ceremony. “Many of the first to die of Covid were in health care. And every day they do the job that we expect them to,” Becerra said.
Louis DeJoy, Postmaster General and Chief Executive Officer of the USPS, spoke of his interactions with health care workers throughout his own life. He expressed gratitude for the staff at the neighborhood clinic he and his siblings would visit as children, and he discussed the efforts of his wife Aldona, a physician who worked with AIDS patients at the beginning of the epidemic. This is DeJoy’s first stamp dedication in his four and a half years as postmaster general.
In January 2021, DeJoy and the USPS began working with the Administration for Strategic Preparedness and Response (ASPR), an agency within HHS, to distribute free Covid-19 test kits to Americans. Roughly 900 million test kits have been distributed thus far. The two organizations then decided to begin working on a Forever stamp to honor those working on the front lines caring for those sick with COVID-19.
“The members of the health care community, sometimes at great personal risk, have dedicated their lives to improving our health, safety and well being, and we owe them an enormous debt of gratitude for their service to the nation,” DeJoy said. “Health care workers have adjusted and still demonstrate acute awareness and the empathy necessary to provide not just medical care but emotional comfort to those they care for in their moments of great vulnerability. This embedded culture of kindness makes the world a better place.”
Remarks were also provided by Dr. Andrea Anderson, a family physician, associate professor, and the Associate Chief of Family Medicine at George Washington School of Medicine and Health Sciences. “Health care workers provided emergency health care when people could be saved and when they could not,” Anderson said. “There were faces shrouded behind masks and face shields breaking the bad news of a positive diagnosis to the terrified. There were those holding electronic tablets to allow a family member one last moment to say goodbye to a loved one, or they themselves became the last human voice heard when time had expired for yet another casualty of the microscopic virus less than the size of a human hair.”
Many health care workers became infected with Covid-19 during its peak, and the World Health Organization estimates that roughly 115,500 people in the health care community died between January 2020 and May 2021.
Dr. Loretta Christensen, Chief Medical Officer for the Indian Health Service, spoke to the Medill News Service about what the stamp means for health care community members. “They’re a very unique and special bunch of people that dedicate their lives to caring for others. And so to actually be recognized for that has to be a great moment for them.”
Abortions in South Carolina are banned after six weeks of pregnancy. Local nonprofits are working to help patients anyway
COLUMBIA, S.C. – Between a real estate attorney’s office and a county magistrate building sits one of South Carolina’s three abortion clinics. Pink and white signs beckon patients, discreetly placed so as not to invite unwanted attention.
Since the overturning of Roe v. Wade in 2022, women and advocates in the state of South Carolina have struggled to safeguard access to reproductive health care, including abortions. Existing policies tend to penalize, rather than uplift, patients seeking care and those who help them. But the people who work on the front lines don’t want to leave. Their work is a crucial part of who they are, they say.
South Carolina’s maternal mortality rate is the eighth-highest in the nation, according to the South Carolina Law Review. Vicki Ringer, the director of public affairs at Planned Parenthood South Atlantic, said she is critical of lawmakers focusing on the wrong victims of an under-resourced health care system.
“Women have died and will continue to die,” she said. “This should require some action on behalf of our legislature – whether that’s in research, expanding Medicaid or providing more rural health care. All of those things would make sense, but the legislature does not do any of those things.”
In August 2023, the state Supreme Court upheld a ban on abortion after six weeks of pregnancy, a similar law that had been struck down just eight months before. After the court’s only female justice retired, it reversed this protection, forcing providers to turn away patients at a stage before many of them even know they are pregnant.
While abortion takes center stage as a national political talking point, so many other facets of reproductive care remain difficult to access throughout the country, including contraception, in vitro fertilization and sex education in elementary schools.
“Our reproductive health care restrictions are some of the most restrictive in the nation,” said Kelli Parker, the director of communications and marketing for the Women’s Rights and Empowerment Network (WREN). “Most South Carolinians support access to reproductive health care. But it’s continually being limited through our legislators that have very extreme ideas about what reproductive health care actually is.”
The Planned Parenthood Health Center in Columbia is one of only three abortion clinics in the state of South Carolina. (Simone Garber/MNS)
It never occurred to Parker that her 11-year-old daughter wouldn’t have the same right to bodily autonomy as she once did. Having grown up in New York, Parker’s access to health care in Charleston, S.C. over the past five years has been vastly different from the medical privacy she’s used to.
“I think people who live outside of the South really take for granted the amount of freedom you have,” she said.
Parker’s agency, based in Columbia, works to expand access to health care, education and economic opportunities for women, girls and gender-expansive people throughout the state. Since 2017, WREN has advised patients seeking reproductive services in a state that was one of the first to impose near-total abortion bans after Roe’s reversal.
Recent policing of gender-affirming care comes from male lawmakers’ need for “control,” Parker said.
“It’s important to remember that abortion bans and restrictions don’t do anything to protect anyone’s health or safety – they’re only punishment,” she said. “Why would you want to elect someone who’s out to punish you?”
Ina Seethaler is the director of college outreach at the Palmetto State Abortion Fund, a volunteer-run organization working to offset the financial barriers to reproductive justice in South Carolina. The fund subsidizes abortion procedures and logistical costs, including transportation and lodging for out-of-state appointments.
Seethaler called South Carolina a “reproductive health care desert,” as local physicians often weigh high-stakes decisions that could leave them incarcerated.
According to the S.C. Office for Healthcare Workforce, 14 out of the state’s 46 counties do not have a practicing OB-GYN. That translates to a ratio of 0.43 for every 1,000 women of reproductive age, according to a South Carolina Center for Rural and Primary Healthcare research brief.
“Folks don’t want to move here,” Seethaler said. “They don’t want to practice here. It’s becoming, frankly, kind of dangerous for them to work here. But things are just going to get worse again at the expense of the people in South Carolina.”
And it’s not just a lack of trained professionals that’s driving the reproductive health care shortage. For patients in desperate situations facing few options and little reliable information, many turn to crisis pregnancy centers (CPCs) for answers. These institutions, which reproductive justice advocates say impart misinformation to pregnant people rather than support, generated nearly $1.4 billion in revenue in the 2022 fiscal year and continue to increase in scope and size nationwide.
As a result of CPC expansion, Seethaler said, many reproductive justice organizations are finding it difficult to persuade patients of their legitimacy.
“That overlap is, unfortunately, really problematic,” she said.
The 35 CPCs in South Carolina well outnumber the abortion clinics in the state. In addition to Columbia, two other Planned Parenthood Health Centers are located in Charleston and Greenville, all at least 100 miles away from one another.
Ringer’s lobbying efforts at the Columbia State House are constantly challenged at the clinic sites, where protesters will “literally drag patients into vans” stockpiled with ultrasounds.
“All of these folks exist only to harass patients,” she said. “They don’t provide any real services. It’s just dogma they’re imposing on people that they’re trying to stop from having an abortion.”
These days, the stakes of health care suppression are extending to other reproductive issues. Last month, the Alabama Supreme Court ruled that frozen embryos would be considered “children” under state law, a mandate that could jeopardize the practice of IVF.
While Alabama has since passed a law to protect IVF treatments, legal experts note that language in other states related to so-called fetal personhood leave many open questions about liability.
“Alabama’s ruling is extremely alarming,” Elisabeth Smith, director of state policy at the Center for Reproductive Rights, wrote in a statement. “This is part of the chaos we knew would ensue if Roe v. Wade was overturned. With politicians at the helm instead of doctors, reproductive health care is in crisis.”
Navigating an increasingly polarized workplace and industry, Ringer underscored her personal motivation for continuing this line of work.
“I know that there are others still in this fight, but I can’t just throw up my hands,” she said. “Everybody deserves the right to decide if, when and how to become parents. Pregnant women, most of all, deserve their own freedom to make a decision.”
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Memories of pandemic wane but long COVID-19 continues for many
ALBANY — When 15-year-old Oneida County resident Matilda Terrell caught COVID-19 for the first time in July 2022, Matilda’s symptoms were mild and they recovered quickly.
But, when they contracted the virus for the second time two months later, their life changed dramatically.
Matilda, who uses they/them pronouns, went from being a happy, well-balanced kid to having severe depression and suicidal ideation almost overnight, according to their mother, Katherine Terrell. When they contracted the virus for a third time in January 2023, they started experiencing crushing fatigue, body aches, a constant headache, brain fog that left them struggling to even read a page, post-exertional malaise, a spiking heart rate, and worsened irritable bowel syndrome symptoms, among others.
Matilda’s mother Katherine described Matilda as a “happy kid” before they developed long COVID. (Courtesy Katherine Terrell)
“It is heartbreaking to see their life reduced to this,” Terrell said. “This is a kid who had just boundless energy their entire life — they would do a full day of school, get all A’s, and then have three hours of dance class before coming home, doing their homework, and going to bed. Now, it’s an accomplishment if they can get out and walk a few blocks.”
Matilda is one of the estimated 18 million Americans who have suffered from residual side effects of COVID-19, known as long COVID-19. The Centers for Disease Control and Prevention estimates that nearly one in five adults who had the virus now have long COVID-19.
According to the National Institutes of Health, there are more than 200 documented long COVID-19 symptoms, which include memory impediments, excessive fatigue, shortness of breath and cognitive impairment.
However, there are no FDA-approved treatments approved by the U.S. Food and Drug Administration to treat the condition. Matilda says their physician told them to “just wait and hope that the research gets done.”
Call for government action
Earlier this year, patients and experts urged the government to declare long COVID-19 a national emergency during a Senate Committee on Health, Education, Labor and Pensions hearing. If declared, the government will be able to fund long COVID-19 research and expedite clinical trials.
In the months following the hearing, the CDC cut its five-day isolation recommendation to one day, a move some public health experts say will lead to more people contracting the virus and developing long COVID-19.
A study conducted by a team of epidemiologists at Washington University in St. Louis found that the risk of getting long COVID-19 increases with each reinfection. Ziyad Al-Aly, one of the authors of the study, worries that public health officials are failing to inform the public about the risks.
“I think the CDC just wanted to change the guidelines because they got sick and tired of the pandemic,” Al-Aly said. “But the facts are that people are still getting COVID infections. Everyone is at risk of long COVID, and I don’t think many people realize that.
President Joe Biden addressed the coronavirus pandemic in his recent State of the Union address, declaring that “the pandemic no longer controls our lives.”
However, for many long COVID-19 patients, like 63-year-old Georgia resident Marjorie Roberts, the pandemic isn’t over. When Roberts contracted the virus in March 2020, she said she suffered from poor balance, nausea, vomiting, and diarrhea, among other issues.
She still has not fully recovered.
Roberts said she believes the government has overlooked long COVID-19. She traveled to Washington, D.C., to deliver a speech last Friday in hopes of bringing the issue to the forefront of public attention.
“I want somebody to hear us, somebody to feel our pain,” Roberts said. “Biden didn’t bring Washington to me, so I’m taking myself to Washington to him. We are a big part of the… union.”
Matilda does a split in the air at the Utica Zoo in Utica, NY. Matilda’s mother Katherine says that Matilda had “boundless energy” before getting long COVID. (Courtesy Katherine Terrell)
Mental health toll
Pam Bishop, a 48-year-old Knoxville, Tenn., resident grappling with long COVID-19, said the lack of public awareness about the condition has fueled loneliness in the community.
Before contracting long COVID-19, Bishop was the director of The National Institute for Stem Evaluation and Research at the University of Tennessee. However, Bishop said she only leaves her home now when it is absolutely necessary, which has made it difficult for her to keep in touch with friends.
“If we’re going to do something I have to know about it beforehand because I have to rest and make sure that my schedule is clear afterwards,” Bishop said. “It is very isolating to be sick like this because you’re exhausted all the time and it’s hard to make plans with people. So, I end up not making plans most of the time.”
Matilda said they went from being a happy kid to “being overwhelmed by suicidal thoughts and wanting to kill myself on a daily basis” after developing long COVID-19. Katherine says that it’s been hard for Matilda to keep up with their friendships because they are constantly missing school and out-of-school activities.
“These are the days where you’re supposed to be spending all your time with friends and going out to parties,” Matilda said. “And because of long COVID, I can’t do any of that. I feel isolated and alone and that’s really hard.”
Financial hardship
The Brookings Institution estimates that as many as 4 million Americans are out of work because of the lingering effects of COVID-19.
Among those sidelined by long COVID-19 is Meighan Stone, who said she can now barely leave her house because of debilitating symptoms from the virus.
Stone had a career in advocacy, working for organizations like the Malala Fund and the Council on Foreign Relations before long COVID-19 symptoms forced her to leave her field. Stone has recently started part-time remote consulting. However, she said it is still not financially sustainable.
She had to transition from Medicaid to private insurance because Medicaid wouldn’t cover the cost of low-dose Naltrexone, a drug that is not yet FDA-approved but has given Stone some relief, she said. The single mother said she wouldn’t be able to afford insurance if it weren’t for the generosity of friends.
Stone’s doctors have encouraged her to apply for Social Security Disability Insurance, but she says she knows she wouldn’t be able to complete the application on her own and doesn’t have the financial resources to hire an attorney.
“I need to spend those resources on taking care of me and my son today,” Stone said. “The disability system is so broken in the United States.”
Andrew Wylam is the co-founder and president of Pandemic Patients, a nonprofit organization that connects those affected by COVID-19 with a network of attorneys who can provide pro-bono legal assistance. Wylam said that applying for disability insurance is an “arduous” process that is particularly challenging for long COVID-19 patients who have cognitive impairments.
“I look at some of the paperwork that you have to go through and all the medical documentation that you have to provide, and I think that can be challenging for someone with average cognitive capacity,” Wylam said. “When you add on the cognitive disability to a person’s symptoms, the process of going through the application and appeals is just overwhelming.”
Wylam said that he’s worked with patients who have applied for Social Security disability insurance and had to wait more than two years for a response. During this time, they are without a steady flow of income, he said.
During the Senate HELP hearing, Rachel Beale, a long COVID-19 patient from Southampton County in Virginia, testified that she was denied Social Security Disability disability insurance twice without any explanation, despite the condition being recognized as a disability under the Americans with Disabilities Act. As a result, she has to pay an estimated $4,000 annually out of pocket and cut back on services that help her manage her chronic pain.
Many of Wylam’s clients have been diagnosed with serious medical conditions and post-viral syndromes that have been brought on by long COVID-19. Wylam said that it can be difficult for patients living with these invisible illnesses to prove they are suffering from symptoms like brain fog, excessive fatigue and difficulty concentrating, which in turn makes it more challenging for them to obtain disability insurance.
When Olenka Sayko went to the emergency room with symptoms of a nervous system disorder a week after testing positive with COVID-19, Sayko said she was told her symptoms were all in her head. This experience of being “gaslit” and dismissed by medical professionals is all too common among long COVID-19 patients, according to Sayko.
In addition to funding for clinical research, the group LC/DC is calling on the government to promote educational campaigns and increase social services for long COVID-19 patients.
“We have a long way to go, and we need to do it quickly because people are suffering,” said Dara York, a founder of LC/DC. “How much longer will we have to stand up and fight?”
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Sanders and stakeholders press lawmakers to reauthorize and increase funding for the Older Americans Act
WASHINGTON — Sen. Bernie Sanders (I-Vt.) on Thursday called on fellow members of the Senate Health, Education, Labor, and Pensions Committee to extend and increase funding for the Older American Act to meet the urgent needs of America’s senior citizens.
The Older Americans Act, signed into law in 1965, authorizes government funding for various critical services for the country’s elderly. The law also supports career opportunities, activities to combat loneliness and isolation, disease prevention, job training, protection from abuse, and access to food, water, and places like the doctor’s office or grocery store. However, the law is due to expire on Sept. 30, creating a new urgency to renew and re-fund it.
During Thursday’s hearing, there appeared to be bipartisan support for reauthorizing the measure, but it was unclear whether both sides of the aisle would agree on how much funding should increase. For instance, ranking member Bill Cassidy (R-La.) emphasized the importance of reauthorizing the Old American Act by improving the programs for seniors and leveraging public-private partnerships to expand service.
“We should take lessons learned during the pandemic and use that new knowledge as how we can better serve those who we intend to serve,” said Cassidy, but seemed hesitant about providing an increase in funding,
According to the Organization for Economic Cooperation and Development (OECD), about 23 percent of Americans over 65 live in poverty.
“One out of every four seniors in America is trying to survive for a new continent less than $15,000 a year. And I’m not quite sure if anybody comes to live with $15,000 a year,” said Sanders, chairman of the HELP committee.
The committee heard from several stakeholders who emphasized the importance of getting additional money for seniors. Among those was Dorothy Hutchins, a 93-year-old Alexandria, Virginia, resident, who testified remotely. She shared her story of struggle after her husband’s death and later had hip surgeries. She highlighted the support she received through the Older Americans Act in maintaining her health.
“Everyone deserves the chance to live where they choose, and for most of us, we want to remain in our homes and communities,” Hutchins told lawmakers.
Since 2016, the number of seniors in America has massively increased despite increased demand. In 2020, almost one in every six adults in the United States is age 65 or older. In 1920, the proportion was less than one in 20.
Sanders argued that adjusting for inflation, funding for the law has decreased by nearly 20 percent. Sanders said that providing adequate nutrition meals to seniors is more cost-effective than treating preventable hospital costs.
“Malnutrition among seniors today costs our society over $50 billion each and every year,” said Sanders.
Ellie Hollander, President and CEO of the Meals on Wheels program, testified before the committee to address the growing gap in senior nutrition resources. She highlighted the struggles of severe hunger, with 2.5 million low-income food-insecure people not receiving meals they’re eligible for. Due to high demand, the Meals on Wheels program has to put them on the waitlist.
Hollander stated that to close the current gap for the nutrition program to be effective for seniors, we need to estimate a $774 million increase. The nutrition program alone must close the current services gap.
Ramsey Alwin, president and CEO of the National Council on Aging, pushed for an increase in the financing and modernization of senior centers to support healthy aging.
“We must address lessons learned from the pandemic, reinstate a separate title for senior senators, strengthen the authorization for modernizing them, and increase funding for senior nutrition programs to allow for parity between home-delivered and congregate meal sites,” Alwin said.
The HELP Committee has invited more comments from stakeholders until March 21 via its email oaa@help.senate.gov
A link to more information can be found here.
How Biden made health care access, affordability priorities in State of Union address
WASHINGTON – President Joe Biden used his State of the Union address to contrast his health care record with former President Donald Trump’s, touting his efforts to lower drug prices and urging Congress to expand access to reproductive freedoms.
Biden addressed the nation just two days after Super Tuesday primaries in over a dozen states, which set the stage for a likely Biden-Trump rematch in November. Here’s a look at the key health care issues the president highlighted:
Support for abortion, reproductive rights
During his address, Biden criticized Trump for rolling back women’s access to reproductive rights but avoided referencing him by name.
“My predecessor came to office determined to see Roe v. Wade overturned,” Biden said. “He’s the reason it was overturned. In fact, he brags about it. Look at the chaos that has resulted.”
Biden called attention to the experience of Kate Cox, a Dallas woman who was forced to travel outside her home state of Texas to access lifesaving abortion care because of the Texas abortion ban. Cox attended the speech on Thursday as one of the guests of first lady Jill Biden.
In the months following the Dobbs v. Jackson Supreme Court decision, which overturned the constitutional right to an abortion, 14 states have made abortion illegal, and several others have imposed restrictions.
Biden vowed to “restore Roe v. Wade as the law of the land again” if Congress passes a bill protecting reproductive rights — though it is highly unlikely that the Democrats could secure 60 votes in the politically divided Senate to overcome the filibuster that would stall the measure.
Biden warned that many Republicans including Trump are “promising to pass a national ban on reproductive freedom,” but underscored women’s voting power, highlighting that reproductive freedom “was on the ballot and won” in the 2022 midterm elections.
“With all due respect justices,” Biden said addressing the Supreme Court, “women are not without electoral or political power.” In an ad-libbed moment, Biden added, “you’re about to realize just how much,” in a reference to the hope that voters in support of reproductive rights would vote in strong numbers in the 2024 election.
Protecting IVF
After the Alabama Supreme Court recently ruled that frozen embryos should be considered children, Biden called on Congress to guarantee the right to in-vitro fertilization, or IVF, treatments nationwide. He highlighted the experience of Latorya Beasley, a social worker from Birmingham, Alabama, who had to put her “dream” of having a second child via IVF on hold as a result of the ruling. Beasley was also a guest of the first lady on Thursday.
The Alabama court decision triggered the temporary closure of three IVF facilities in the state. However, in the days after the court ruling, Alabama Gov. Kay Ivey signed a bill into law Wednesday shielding IVF providers in the state from potential criminal liability, but the issue of whether embryos should get legal protection remains an open question in many states that restrict abortion.
Earlier this year, Sen. Tammy Duckworth (D-Ill.) introduced a bill protecting IVF at the federal level, but Sen. Cindy Hyde-Smith (R-Miss.) blocked the measure, arguing that it was a “vast overreach that is full of poison pills that go way too far — far beyond ensuring legal access to IVF.”
“What (Beasley’s) family has gone through should have never happened,” Biden said. “And unless Congress acts, it could happen again.”
Keeping drug prices under control
During his address, Biden also took aim at Trump’s previous unsuccessful efforts to repeal the Affordable Care Act. By contrast, Biden noted that he successfully passed the Inflation Reduction Act in 2022, which allowed Medicare to directly negotiate prices of certain costly drugs lacking generic competition. His administration is for the first time negotiating directly with drug companies over the price of medications. The law also caps out-of-pocket yearly maximum prescription drug costs at $2,000 by 2025 and sets the maximum price of a vial of insulin at $35 a month for diabetic seniors on Medicare.
Biden called on Congress to extend the insulin price cap to private insurance and to expand on his legislation by giving Medicare the ability to negotiate the prices of 500 drugs over the next decade.
“With a law I proposed and signed and not one Republican voted for we finally beat Big Pharma,” Biden said. “For years people have talked about it but I finally got it done,” he later added.
People with disabilities at high risk of unemployment
WASHINGTON — People with disabilities are still being excluded from gainful employment and are still often being paid below the minimum wage, lawmakers were told during a hearing on Thursday conducted by the Senate Special Committee on Aging.
“It is time we stop thinking about how we can work and who can not work and instead start thinking about what we can all do to help all people with a desire to work and get employment,” said Lauren Avellone, an associate professor at the Rehabilitation Research and Training Center at Virginia Commonwealth University “many of whom want to work and contribute significantly to our workforce.”
Avellone noted in her written testimony that while 40.5% of individuals with disabilities were employed in January of 2024, it was “ alarmingly low” when compared to the 77.3% of people employed without disabilities. She recommended a number of changes, including eliminating so-called 14c certificates that allows companies to pay workers with disabilities less than the minimum wage.
Senators also heard horror stories from people with disabilities. Erin Willman described how she faced hardships when looking for work after losing her vision at age 15.
“Time and time again, I faced rejection, due to the fact people could see all the things I could not do instead of the things I could do,” she said.
After going to a local Office of Rehabilitation, she was told she was never going to find competitive employment.
“This made me question my worth,” she said.
But with the help of her family members, she became the founder and CEO of Coffee Cane Company, which now hires people with disabilities so that they can have the same opportunities as others.
Sen. Bob Casey (D-Pa.) said he is trying to pass a new law to help encourage companies to hire people with disabilities to work alongside those without disabilities.
“People with all kinds of disabilities can work in a competitive integrated employment environment. It is shameful that people with disabilities are still being paid subminimum wages,” he said. “Thankfully, phasing out this discriminatory wage is a bipartisan priority.”
The proposed measure, called the Disability Employment Incentive Act, would expand three existing tax benefits to businesses that successfully hire and retain people with disabilities, Casey said.
According to Sen. Mike Braun (R-Ind.), there are currently over 1.8 million business owners with disabilities in the U.S.
“We must continue to support these entrepreneurial individuals so that they can expand and support their own businesses,” he said.
Impassioned protesters urge Congress to undo ‘big dialysis’
WASHINGTON – When Justin Charles Evans began suffering from kidney failure, he said his career as an actor and stunt double came to a halt. He and others rallied outside the U.S. Capitol Thursday morning to advocate for the improved care of dialysis patients.
Evans wants to spread awareness about how many Black dialysis patients receive poor care.
“I saw other people are going through worse things than me. D.C. is a district, it’s not even a state, so they treat those people horribly,” he said. “That made me say if I have to die for this, then I will. I will step up and I will say something because I can’t just sit silently while my family – my people – die.”
According to a video by Healthy DC & Me Leadership Coalition, the per capita costs of dialysis in the United States are the highest in the industrialized world, but the U.S. still has one of the highest prevalences of kidney failure, disproportionately affecting minority and low-income individuals.
Rhonda Hamilton, the president of the Healthy DC & Me Leadership Coalition, called the two largest dialysis providers, DeVita and Fresenius, “big dialysis” and a “duopoly.” The coalition’s video said the companies “put profits before proper patient healthcare.”
“We must dismantle ‘big dialysis,’” Hamilton said in front of Thursday’s crowd.
A table at Thursday’s rally had piles of shirts urging Congress to take action against “big dialysis” (Ruby Grisin/MNS).
Coalition members and advocates gathered in front of the Capitol to urge lawmakers to prevent the influence of “big dialysis” (Ruby Grisin/MNS).
Healthy DC & Me Leadership Coalition President Rhonda Hamilton provided a T-shirt for an attendee at Thursday’s rally (Ruby Grisin/MNS).
Rally attendees posed together with protest signs in Union Square outside the U.S. Capitol Building (Ruby Grisin/MNS).
Actor and stunt double Justin Charles Evans, who is a dialysis patient and activist, held a book about the horrors of the United States’ healthcare system, titled “How to Make a Killing,” by Tom Mueller (Ruby Grisin/MNS).
People came together on Thursday to press for more equality and better care for dialysis patients (Ruby Grisin/MNS).
Lawmakers voice concern over economic setbacks caused by abortion bans
WASHINGTON — When Tennessee resident Allie Phillips heard she was pregnant with her second child, she said she and her husband Brian were “so excited.” However, after 19 weeks, Phillips met with a fetal specialist and received news that no expecting parent wants to hear: The baby she was carrying had a rare brain condition and would not be able to survive for long outside of the womb.
Phillips’ specialist said she had two options: risk her own health and continue with the pregnancy or travel out of state to obtain an abortion. Tennessee law bans abortions except under very limited medical emergency exceptions. Phillips raised money on GoFundMe and traveled to New York to obtain an abortion, during which time she suffered a miscarriage.
“I am distraught,” Phillips told the Senate Committee on the Budget during a hearing on Wednesday. “I went into surgery alone. I sat in recovery alone. I grieved her loss alone in a city I’ve never been far away from the comfort of my home… No family should be treated this way.”
Even with the GoFundMe resources, Phillips, a mother to a then-5-year-old, still lost the equivalent of three weeks of pay due to traveling and childcare costs. Without financial assistance from her parents, Phillips said she wouldn’t have been able to pay the bills.
Phillips was among the witnesses who spoke about the detrimental economic effects resulting from abortion restrictions following the landmark Supreme Court ruling Dobbs v. Jackson in 2022, which overturned the constitutional right to an abortion.
Since then, 14 states have made abortion illegal, and several others have imposed restrictions. An American Journal of Public Health study released in 2018 found that women who are denied an abortion are four times more likely to live in poverty. The same study found that women who carry an unwanted pregnancy to term experience a 78% increase in debt and an 81% increase in adverse credit reports like evictions and bankruptcies.
Caitlin Myers, a professor of economics at Middlebury College, said deciding when to become a mother is “the single largest economic decision many women will make in their lifetime,” noting that first-time mothers see a 30% reduction in pay.
“When Republican politicians take away a woman’s control over her own body, they’re also taking away women’s ability to plan their families, their finances, and their future on their own terms,” Sen. Patty Murray (D-Wash) added. “It’s pretty clear that Republicans want women to stay pregnant but won’t lift a finger to help new parents.”
Ranking member Chuck Grassley (R-Iowa) accused Senate Democrats of “dehumanizing” abortion and questioned why the committee held the hearing in the first place.
“Abortion is not an issue that lends itself to being looked at solely through an economic lens,” Grassley said. “After all, life is priceless.”
On February 16th, the Alabama Supreme Court ruled that embryos created through in-vitro fertilization (IVF) should be considered children. Since the ruling, three Alabama clinics have paused their IVF services.
Several lawmakers and panelists expressed concerns that legislatures could soon restrict women’s access to IVF and contraceptives.
According to Myers, IVF allows women more time to seek the right partner and invest in their education and career before starting a family. If IVF were restricted, Myers said she fears it could set women back economically even further.
Chairman Whitehouse (D-R.I.) called on Congress to pass federal legislation legalizing access to abortion, IVF, and contraceptives.
“Generations of women fought for their freedom to make their own decisions… but now extremists are trying to undo it all,” Sheldon Whitehouse (D-R.I.) added. “Congress should safeguard access to abortion and contraceptives and codify Roe into law.”
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Bipartisan bill targets burnout and suicide rate among health care providers
WASHINGTON — Lawmakers expressed bipartisan support for the reauthorization of legislation aimed at protecting health care workers from burnout Wednesday.
The legislation follows an uptick in mental health emergencies faced by health care providers as a result of occupational burnout, with more than 46% of health care workers reporting that they are experiencing burnout, and 44% of those workers saying they are looking for a new job.
The bill, called the Dr. Lorna Breen Health Care Provider Protection Act, was debated by the House Energy and Commerce Committee and is aimed at making structural changes within hospitals to prevent provider burnout.
“Burnout is an occupational syndrome related to the external environment in which people work,” said Corey Feist, the CEO and co-founder of the Dr. Lorna Breen Heroes’ Foundation. “[It] is like a bleeding wound…until you address the environment of care, the source of the bleeding, you have not fixed the wound at its source.”
The foundation, and the sequential legislation, is named after Feist’s sister Lorna Breen, a doctor who died by suicide following the stress put upon her as a doctor in New York City during the pandemic.
At Wednesday’s hearing, Feist shared testimonies from health care providers that echo his family’s experience. In his opening statement, he read a portion of a letter written by Tristin Kate Smith, a nurse who, like Lorna, died by suicide after experiencing burnout in the industry.
“I gave my heart, my body, and my mind to you; dedicated long hours and days and gave you all my all,” wrote Smith in a letter titled Dear Abuser. “I no longer feel like you care about me or the people you say you serve…when we dare to think we are finally going to get the love and support we deserve, we get a pizza party and free pens for the “healthcare heroes”… I so desperately want to continue to help people, but I cannot stay in this abusive relationship.”
For female health care workers like Smith or Breen, they are more than eight times more likely to take their own lives than the general female population.
“Doctors are trained to put their own feelings aside, and work long hours and not admit when they are having a mental health crisis,” said Rep. Schrier (D-Wash.), who worked as a pediatrician before joining Congress. “That is the culture of medicine.”
The proposed bill would change systemic factors that contribute to burnout. Rather than emphasizing individual resistance, an approach often criticized for being isolating, it would instead encourage hospital environments to change.
Included in these changes is an alteration to how medical facilities provide insurance coverage, which incentivizes doctors and nurses to seek care from within their own hospital system, a reality that Feist said leads to shame and embarrassment when having to confess a mental health emergency to a co-worker.
“Their employer defines who provides them the care and, in most cases, your hospital system provides insurance to your employees,” said Feist, “You tend to not want to broaden the network of options because you’re kind of paying your competitor to take care of your employees.”
The proposed bill is a renewal of the 2021 Dr. Lorna Breen Health Care Provider Protection Act, which provided 44 health organizations with $103 million to establish “mental health and well-being strategies.”
While the Act impacts more than 60,000 health care workers in the country, it reaches less than 1% of the hospitals.
“More than 400 physicians die each year by suicide and rates of physician suicide,” said Rep. Miller Meeks (R-Iowa), a physician on the committee.
If the bipartisan bill is renewed, Feist says it would focus on expanding its reach, targeting hospital systems procedures and approach to staff care.
“Every health care worker in this country is experiencing a mental health crisis right now,” said Feist.
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Medill Today | January 16, 2025