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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.
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Health care professionals call on Trump to release medical records
Amidst mounting concerns about Trump’s public appearances, doctors call on his campaign to be transparent with his health information.
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FDA and NIH discuss smoking cessation practices, reviving e-cigarette debate
The nation’s top tobacco cessation doctors acknowledged that e-cigarettes are less harmful than standard cigarettes. But experts warn that vaping is not a risk-free alternative.
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An update on bird flu in the U.S.
The CDC confirmed a third case of bird flu in California on Wednesday, with two additional presumed cases awaiting test results.
read moreNew 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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As maternal mortality rates increase, medical professionals, moms look toward technology as a solution
Black women are at greatest risk of dying from pregnancy-related complications. Emerging technologies, like artificial intelligence and remote patient monitoring devices, are showing promise in helping prevent such deaths.
The U.S. medical community is desperately looking for better ways to address the debilitating maternal mortality crisis. Over 1,200 women –– more than 30 percent of whom were Black –– died from maternal causes in 2021.
Hundreds of AI-enabled medical devices have already been cleared by the Food and Drug Administration, but innovations in maternal health, such as wearable ultrasounds, are relatively new and still awaiting approval. As these technologies begin reaching the market, some experts are concerned that, without proper guardrails in place, they may do more harm than good.
“If we don’t do this carefully, in a few years we may see that it’s actually harming babies or the mother, and people will say shut it down,” said Dr. Michael Abramoff, who recently authored a publication on AI bias and equity in health care.
Among wealthy nations, the U.S. has the highest rate of maternal mortality, which the Centers for Disease Control and Prevention (CDC) defines as “the death of a woman during pregnancy or within one year of the end of pregnancy.”
Black mothers have historically had high maternal mortality rates, caused primarily by limited access to quality health care and structural racism, both of which also contribute to a higher predisposition for chronic illnesses. In 2021, the maternal mortality rate was 69.9 deaths per 100,000 live births, 2.6 times the rate for white women, according to a CDC report released earlier this year.
“They’re the most at risk,” said Olivia Atley, a certified doula in Columbus, Ohio, who primarily works with Black women. “And not at risk because they’re deficient…but [because] their skin color is not the same as the majority of the folks who will be providing them care.”
Atley has guided dozens of moms through labor and birth and has provided postpartum care. Her experiences as a single, Black woman who struggled through her pregnancy motivated her to serve her community.
Efforts are already underway on Capitol Hill to improve outcomes for pregnant women, particularly Black women. Harnessing digital solutions like AI has growing support across party lines.
The Tech to Save Moms Act, a bipartisan bill introduced in the House and the Senate in July, aims to integrate these devices into maternal health care. If passed, the legislation would make investments to promote the integration and development of telehealth services and require reports on the effectiveness of AI and wearable technologies. Preview (opens in a new tab)
The legislation is part of a bigger package of bills called the Black Maternal Health Momnibus Act, which aims to address the maternal mortality crisis, particularly for underserved communities.
Rep. Nikema Williams (D-Ga.), who sits on the Black Maternal Health Caucus, introduced the Tech to Save Moms Act because of her own experience with preeclampsia, a life-threatening pregnancy-related blood pressure condition, while she was pregnant with her son, Carter.
“That is not the reality for so many other women that are in that situation. They don’t live to even tell the story and to see their baby grow up,” Williams said. “I have a role and a position of power now to speak up and to do something about this to change it.”
The congresswoman said the telemedicine boom during the COVID-19 pandemic also inspired her to pursue the proposed legislation.
Some companies in the medical industry are already leveraging newer forms of technology to fight maternal health disparities.
Lucina Analytics, a medical technology company, compiles data from health insurance plans, electronic health records and public data exchanges. It then uses that data to create AI predictive models to identify at-risk pregnant individuals by evaluating compounding factors such as disease, behavioral health disorders and chronic social stressors such as access to care or nutrition. Lucina founder and physician Dr. Matt Eakins said that, since 2020, the portion of pregnant women who they identified as “very high risk” has doubled to over 10 percent in 2023.
“We hear from patients all too often that, by the end of the week, sometimes food runs out and [they] have to choose between feeding [their] older kids or feeding [themselves]. And that’s really unfortunate,” Eakins said. “We try to identify and pull together a complete picture and use our predictive models to understand who’s at risk of having a poor maternity.”
Eakins said he thinks it is possible for every woman to see the health care system as a safe, inviting place to have their babies and that technology and tools can make that a reality.
But Atley warns that technology alone will not solve the issue.
“The end to racism is the fix,” Atley said. “But I probably won’t need a job if that happened, which would be perfectly fine by me because I would rather people be giving birth safely.”
The complicated relationship between Black individuals and the medical industry, one fostered by a history of racism and abuse, particularly regarding women’s health, poses a challenge. Atley said that this is a common reason why her patients seek out her support.
“Every single family that I closed out let me know how necessary it was,” Atley said. She said the lack of trust in medical providers and the medical system must be addressed before integrating technology into maternal care.
A whole new form of trust would need to be developed with innovations like AI, which have already shown racial biases. Rep. Williams said many are skeptical of AI because of these existing biases, even on Capitol Hill.
Both advocates and medical experts believe that, without implementing the necessary safeguards, this technology could further widen racial disparities.
“It can be said that it’s easier to change an algorithm than to change a human mindset,” said Dr. Jagmeet Singh, a professor of medicine at Harvard Medical School and author of “Future Care: Sensors, Artificial Intelligence, and the Reinvention of Medicine.”
Singh and other leaders in medical AI have outlined proactive steps to ensure algorithms address underlying human implicit biases.
Because AI models are trained on existing data sets, ensuring data equity is crucial to improving health outcomes. For example, existing biases and distrust in data sharing may prevent marginalized groups from contributing to data banks. Experts advise evaluating algorithm performances within subgroups, such as specific gender and racial populations, and making that information public to ensure transparency.
“We have to get it right from the start and what we show is that this is entirely feasible,” Abramoff said.
Experts warned that racial biases can exist in wearable patient monitoring devices, too.
Last month, more than two dozen attorneys general wrote a letter to the FDA urging officials to take action on the inaccuracy of pulse oximeters, electric devices attached to the fingertip to monitor oxygen levels, on people with darker skin.
Singh said it is crucial to address these issues.
“Digital inequity is equal to health inequity,” he said. Singh has researched the racial inequities in wearable devices.
Rural communities are also suffering from the maternal health crisis.
Providers, advocates and lawmakers are optimistic about technology’s use in rural and underserved communities, which are already benefiting from options like telehealth.
“There are far too many women needlessly dying during childbirth, especially in rural communities where access to quality care is difficult to find,” Rep. Dave Joyce (R-Ohio), who co-sponsored the Tech to Save Moms Act, said in a statement to the Medill News Service.
In 2022, over 500,000 babies were born to women who live in rural counties, while only seven percent of obstetric providers practice in rural counties, according to a report by the March of Dimes.
“In those areas, pregnancy is not happy. Pregnancy is something you survive,” said Linsey Griffith, who has been working as a certified doula for the last decade. Her upbringing in rural Ohio opened her eyes to the health care system’s disservice to expecting mothers like herself, with her own miscarriage inspiring her to advocate for other moms.
However, emerging technologies like AI will not solve the need for compassionate, in-person care and the shortage of birthing centers and health care providers.
“I have folks that do telehealth, I have folks that do virtual with me, but they still have to drive an hour and a half in labor or schedule their induction or their C-section to birth at a competent health care facility,” Griffith said. She noted that the lack of internet access in rural areas is also an impediment to digital solutions.
In 2021, Congress empowered states to expand Medicaid postpartum coverage to one year, and 37 states and the District of Columbia have already done so.
Advocates and physicians say that more needs to be done and that the solutions offered in the Black Maternal Health Momnibus Act, including continued research into the potential benefits of AI, are crucial for curbing the U.S.’ worsening maternal health crisis.
This includes increased funding support for community-based doulas, as medical experts including the American College of Obstetricians and Gynecologists and the Society for Maternal–Fetal Medicine have noted the positive impact doula care has on a woman’s pregnancy and birthing experience.
However, out of the 14 bills in the Momnibus, only two — Tech to Save Moms and the reintroduced Protecting Moms Who Served Act — have bipartisan support. Leaders of the package are optimistic that those single bills can pass before there is broader support for the Momnibus.
“It’s dealmaking season,” said Rep. Lauren Underwood (D-Ill.), co-founder and co-chair of the Black Maternal Health Caucus, which is spearheading the Momnibus. “The Momnibus should be included in whatever legislative vehicles end up moving.”
Providers and advocates on the ground say urgent action is needed, but technology is only one piece of the puzzle.
“We’ve got to re-establish and affirm some quality relationships and rapport before we can step into that space,” Atley said. “There’s no one-size-fits-all for the circumstances that are at hand right now.”
Native Americans, facing lack of access to clean water, press for a new bill to help fix problem
WASHINGTON – Lawmakers met Thursday to discuss a series of legislation meant to correct injustices facing Native Americans, some of which have been overlooked for centuries.
Proposals to help provide tribes commercial independence, improved health care services and land reclamation were all on the table at the Senate Committee on Indian Affairs hearing. But access to clean water, a basic need that most Americans do not have to worry about, is a particularly pressing struggle for Indian Country.
Nearly one out of every two tribal homes lacks access to clean water or proper sanitation, which equates to roughly 662,000 people. For some, the situation is even more dire. People of the Navajo Nation are 67 times more likely than other Americans to lack access to running water or indoor plumbing.
“This is 2024. To know that statistic is one so many are living with is really very troubling,” said Sen. Lisa Murkowski (R-Alaska).
Previous legislation, including the 2021 Bipartisan Infrastructure Law, was a start to combating the crisis. The law is providing billions of dollars for the construction and repair of water sanitation facilities on Native lands, but tribes around the country still face challenges.
Manuel Heart, chairman of the Ute Mountain Ute Tribe, testified that his tribe lacks the skills and time it takes to successfully apply for and obtain grants. It also doesn’t have the training and staff to adequately upkeep water facilities.
He added that Native municipalities cannot rely on revenue from property taxes to fund operation and maintenance costs because tribal land is owned by the federal government.
One proposed bill, Tribal Access to Clean Water Act of 2023, aims to fill the gaps. It would provide roughly $1.5 billion through 2028 for technical assistance to create self-sustaining facilities, like obtaining grants and construction contracts and ensuring investments are maintained.
The U.S. has long promised sovereignty to American Indians. In 1832, Supreme Court Chief Justice John Marshall said such groups are “distinct, independent political communities retaining their original natural rights.”
“Without reliable clean drinking water, the Ute Mountain Ute people cannot maintain their sovereign right to self sufficiency and self government,” Heart told lawmakers. “I am here today to remind the United States of its obligations once again.”
The dearth of clean water is so normal in the White Mesa Ute community, Heart explained, that it is customary to bring bottled water as a greeting gift.
“No family in this country should have to raise their children without clean water. No member of a tribe should have to accept circumstances none of us would accept for our own family,” said Sen. Michael Bennet (D-Colo.). “This hardship is particularly egregious because it is a direct consequence of the federal government’s failure to honor promises and treaties made to tribes across this land.”
Pharma CEOs defend high drug prices before Senate hearing
WASHINGTON — Lawmakers on Thursday grilled the CEOs of three major pharmaceutical companies on why the U.S. pays the highest prices in the world for prescription drugs, demanding that they find ways to lower medication costs.
“The outrageous cost of prescription drugs in America means that one out of four of our people go to the doctor, get a prescription, and cannot afford to fill that prescription,” said Sen. Bernie Sanders (I-Vt.), chair of the Senate Committee on Health, Education, Labor and Pensions. He also slammed the industry for huge windfalls, noting that “10 of the top pharmaceutical companies in America made over $110 billion in profits in 2022.”
A report released by HELP majority staff on Tuesday found that the median launch price of innovative prescription drugs sold by Johnson & Johnson, Merck and Bristol Myers Squibb — the three pharmaceutical companies represented during the hearing — have exponentially increased their initial prices of new drugs over the past four years when compared with the 2004-2008 period.
That same report also revealed that the three companies set their drug prices considerably higher in the United States than in comparable developed nations. Merck, for example, sells cancer drug Keytruda for $191,000 a year in the United States but only for $112,000 in Canada and $44,000 in Japan.
Chris Boerner, the CEO of Bristol Myers Squibb, admitted that consumers pay more for their drugs in the United States than those in other countries but blamed high drug costs on pharmacy benefit managers — the intermediaries between insurance providers and pharmaceutical manufacturers — who push drug prices higher.
“We set the list price, but that list price for Eliquis is driven up by the incentives of intermediaries,” Boerner said. “We would love to work with Congress to bring that down.”
In an interview with Medill News Service, Robin Feldman, a professor of law at UC Law San Francisco, said she “heartily agrees” with Boerner that PBMs play a major role in pushing drug prices higher. But she added that the system benefits the pharmaceutical industry overall.
“The drug companies will point to PBMs as the bad guys, but the system can also work in favor of the drug companies,” Feldman said. “PBMs are able to siphon off a significant amount of money in the supply chain process, but in exchange for that, pharmaceutical companies get preferred positions in the insurance claim.”
During the hearing, Boerner also touted Bristol Myers Squibb’s investment of more than $65 million in research and development over the past decade, arguing that it has bolstered innovation and allowed Americans to gain access to life-saving treatment before the rest of the world.
However, many lawmakers including Sen. Chris Murphy (D-Conn.) pointed out that Johnson & Johnson and Bristol Myers Squibb spent more in 2022 on stock buybacks, dividends and executive compensation than they did on R&D.
“When you say you’re in the business of saving lives, you have to think about putting patients over profits,” Sen. Patty Murray (D-Wash.) added. “Sky high drug costs are forcing many people, including in my home state of Washington, to choose between filling their prescription and paying for other things they need — essentials like groceries or rent.”
Sen. Maggie Hassan (D-N.H) also called out the CEOs for making minor modifications to existing patented drugs to prolong exclusivity over the market, stifling competition and preventing lower drug prices from coming into the market.
Bristol Myers Squibb has sued to block two approved generics of the blood thinner Eliquis from entering the U.S. market until 2028 even though the original patents on the medications have already expired. Merck has already filed 168 patents for its cancer drug Keytruda.
“Merck is using patent gimmicks and loopholes to delay other companies from selling lower cost versions of this medication, all while raising the price of Keytruda in the U.S. year after year,” Hassan said.
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Medill Today | November 21, 2024