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Health and other federal programs are at risk of shutting down, at least temporarily, as Congress races toward the Oct. 1 start of the fiscal year without having passed any of its 12 annual appropriations bills. A small band of conservative House Republicans are refusing to approve spending bills unless domestic spending is cut beyond levels agreed to in May.
Meanwhile, former President Donald Trump roils the GOP presidential primary field by vowing to please both sides in the divisive abortion debate.
This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat News, and Tami Luhby of CNN.
Among the takeaways from this week’s episode:
The odds of a government shutdown over spending levels are rising. While entitlement programs like Medicare would be largely spared, past shutdowns have shown that closing the federal government hobbles things Americans rely on, like food safety inspections and air travel.
In Congress, the discord isn’t limited to spending bills. A House bill to increase price transparency in health care melted down before a vote this week, demonstrating again how hard it is to take on the hospital industry. Legislation on how pharmacy benefit managers operate is also in disarray, though its projected government savings means it could resurface as part of a spending deal before the end of the year.
On the Senate side, legislation intended to strengthen primary care is teetering under Bernie Sanders’ stewardship — in large part over questions about how to pay for it. Also, this week Democrats broke Alabama Republican Sen. Tommy Tuberville’s abortion-related blockade of military promotions (kind of), going around him procedurally to confirm the new chair of the Joint Chiefs of Staff.
And some Republicans are breaking with abortion opponents and mobilizing in support of legislation to renew the United States President’s Emergency Plan for AIDS Relief — including the former president who spearheaded the program, George W. Bush. Meanwhile, polling shows President Joe Biden is struggling to claim credit for the new Medicare drug negotiation program.
And speaking of past presidents, former President Donald Trump gave NBC an interview over the weekend in which he offered a muddled stance on abortion. Vowing to settle the long, inflamed debate over the procedure — among other things — Trump’s comments were strikingly general election-focused for someone who has yet to win his party’s nomination.
Rick Jaenisch went through treatment six times before his hepatitis C was cured in 2017. Each time his doctors recommended a different combination of drugs, his insurer denied the initial request before eventually approving it. This sometimes delayed his care for months, even after he developed end-stage liver disease and was awaiting a liver transplant.
“At that point, treatment should be very easy to access,” said Jaenisch, now 37 and the director of outreach and education at Open Biopharma Research and Training Institute, a nonprofit group in Carlsbad, California. “I’m the person that treatment should be ideal for.”
But it was never easy. Jaenisch was diagnosed in 1999 at age 12, after his dad took him to a San Diego hospital because Jaenisch showed him that his urine was brown, a sign there was blood in it. Doctors determined that he likely got the disease at birth from his mom, a former dental surgical assistant who learned she had the virus only after her son’s diagnosis.
People infected with the viral disease, which is typically passed through blood contact, are often outwardly fine for years. An estimated 40% of the more than 2 million people in the U.S. who are infected don’t even know they have it, while the virus may quietly be damaging their liver, causing scarring, liver failure, or liver cancer.
With several highly effective, lower-cost treatments now on the market, one might expect that nearly everyone who knows they have hepatitis C would get cured. But a study from the Centers for Disease Control and Prevention published in June found that is far from the case. A proposal by the Biden administration to eliminate the disease in five years aims to change that.
Overall, the agency’s analysis found, during the decade after the introduction of the new antiviral treatments, only about a third of the people with an initial hepatitis C diagnosis cleared the virus, either through treatment or the virus resolving on its own. Most infected people had health insurance of some kind, whether Medicare, Medicaid, or commercial coverage. But even among commercially insured patients, who were most likely to receive treatment, only half of those age 60 or older had viral clearance by the end of the study period in 2022.
“Unlike HIV, where you have it for the rest of your life, with hepatitis C it’s a very short time frame, just eight to 12 weeks, and you’re cured,” said Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. “So why aren’t we doing a better job?”
Experts point to several roadblocks that infected people encounter. When the new treatments were introduced, cost was a huge factor. Private plans and state Medicaid programs limited spending on the pricey drugs by making them tougher to get, imposing prior authorization requirements, restricting access to people whose livers were already damaged, or requiring patients to abstain from drug use to qualify, among other restrictions.
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By the time Jaenisch’s case was cured at age 31, the landscape of hepatitis C treatment had changed dramatically. A groundbreaking, once-a-day pill was introduced in 2013, replacing a grueling regimen of weekly interferon injections that had uncertain success rates and punishing side effects. The first of these “direct-acting antivirals” treated the disease in eight to 12 weeks, with few side effects and cure rates exceeding 95%. As more drugs were approved, the initial eye-popping $84,000 price tag for a course of treatment has gradually dropped to about $20,000.
As drug prices have declined, and under pressure from advocates and public health experts, many states have eliminated some of those barriers that have made it difficult to get approved for treatment.
Still more barriers exist that have little to do with the price of the drug.
Ronni Marks, a former hepatitis C patient, advocates for patients who often fall through the cracks. These include rural residents and those who are uninsured, transgender people, or injection drug users. An estimated 13% of people who pass through U.S. jails and prisons each year have a chronic hepatitis C infection, but access to care there is scant.
Marks said that many disadvantaged people need help getting services. “In many cases they have no way to travel, or they’re not in a situation where they can get to testing,” she said.
Unlike the federal Ryan White HIV/AIDS Program, which for more than 30 years has provided grants to cities, states, and community-based groups to provide medication, treatment, and follow-up care for people with HIV, there’s no coordinated, comprehensive program for patients with hepatitis C.
“In a perfect world, that would have been a good model to replicate,” said Sonia Canzater, the senior project director of the infectious diseases initiative at Georgetown’s O’Neill Institute for National and Global Health Law. “That’s probably never going to happen. The closest thing we can hope for is this national plan, to systemically provide access so that people aren’t beholden to the policies in their states.”
The national plan Canzater is referring to is a $12.3 billion, five-year initiative to eliminate hepatitis C that was included in President Joe Biden’s fiscal year 2024 budget proposal. Former National Institutes of Health director Francis Collins is spearheading the initiative for the Biden administration.
The program would:
Speed up the approval of point-of-care diagnostic tests, allowing patients to be screened and begin treatment in a single visit, rather than the current multistep process.
Improve access to medications for vulnerable groups such as people who are uninsured, incarcerated, part of the Medicaid program, or members of American Indian and Alaska Native populations by using a subscription model. Known as the Netflix model, this approach enables the government to negotiate a set fee with drug companies that would cover treatment for all the individuals in those groups that need it.
Build the public health infrastructure to educate, identify, and treat people who have hepatitis C, including supporting universal screening; expanded testing, provider training, and additional support for care coordination; and linking people to services.
“This is both about compassion and good financial sense,” Collins said, pointing to an analysis by Harvard researchers projecting that the program would avert 24,000 deaths and save $18.1 billion in health spending over 10 years.
Collins said legislation to implement the Biden plan, currently in draft form, was expected to be introduced now that Congress has reconvened after its summer recess. The Congressional Budget Office has not yet estimated its cost.
Until covid-19 burst on the scene in 2020, hepatitis C had the dubious distinction of killing more Americans annually — nearly 20,000 — than any other infectious disease. Advocates are pleased that the virus is finally getting the attention they believe it deserves. Still, they are not confident that Congress will support providing more than $5 billion in new funding for it. The rest would come in the form of savings from existing programs. But, they said, it’s a step in the right direction.
“I’m thrilled” that there is a federal proposal to end hepatitis C, said Lorren Sandt, executive director of the Caring Ambassadors, a nonprofit in Oregon City, Oregon, that helps people manage chronic diseases such as hepatitis C. “I’ve cried so many times in joy since that came out.”
Abby Madore covers a lot of ground each day at work.
A staffer at a community health center in Carson City, Nevada, Madore spends her days helping low-income residents understand their health insurance options, including Medicaid. Her phone is always ringing, she said, as she fields calls from clients who dial in from the state’s remote reaches seeking help.
It’s a big job, especially this year as states work to sort through their Medicaid rolls after the end of a pandemic-era freeze that prohibited disenrollment.
A few dozen specialists work for seven navigator organizations tasked with helping Nevadans enroll in or keep their coverage. Madore said she mostly works with people who live in rural Nevada, a sprawling landmass of more than 90,000 square miles.
Katie Charleson, communications officer for Nevada’s state health marketplace, said it’s always a challenge to reach people in rural areas. Experts say this problem isn’t unique to the state and is causing concern that limited resources will throw rural Americans into jeopardy as the Medicaid unwinding continues.
Recent data submitted to the Centers for Medicare & Medicaid Services shows 72% of people who have lost Medicaid coverage since states began the unwinding process this year were disenrolled for procedural reasons, not because officials determined they are no longer eligible for the joint state-federal health insurance program.
By late August, federal officials directed state Medicaid overseers to pause some procedural disenrollments and reinstate some recipients whose coverage was dropped.
Experts say those procedural disenrollments could disproportionately affect rural people.
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A brief recently published by researchers at the Georgetown University Center for Children and Families noted that rural Medicaid recipients face additional barriers to renewing coverage, including longer distances to eligibility offices and less access to the internet.
Nationwide, Medicaid and CHIP, the Children’s Health Insurance Program, covered 47% of children and 18% of adults, respectively, in small towns and rural areas, compared with 40% of children and 15% of adults in metropolitan counties.
“As is clear from our research, rural communities rely on Medicaid to form the backbone of their health care system for children and families,” said Joan Alker, who is one of the brief’s co-authors, the executive director of the Center for Children and Families, and a research professor at Georgetown’s McCourt School of Public Policy. “So if states bungle unwinding, this is going to impact rural communities, which are already struggling to keep enough providers around and keep their hospitals.”
A lack of access to navigators in rural locales to help Medicaid enrollees keep their coverage or find other insurance if they’re no longer eligible could exacerbate the difficulties rural residents face. Navigators help consumers determine whether they’re eligible for Medicaid or CHIP, coverage for children whose families earn too much to qualify for Medicaid, and help them enroll. If their clients are not eligible for these programs, navigators help them enroll in marketplace plans.
Navigators operate separately from Nevada’s more than 200 call center staffers who help residents manage social service benefits.
Navigators are required by the federal government to provide their services at no cost to consumers and give unbiased guidance, setting them apart from insurance broker agents, who earn commissions on certain health plans. Without them, there would be no free service guiding consumers through shopping for health insurance and understanding whether their health plans cover key services, like preventive care.
Roughly 30 to 40 certified enrollment counselors like Madore work at navigator organizations helping consumers enroll in plans through Nevada Health Link, the state health marketplace, which sells Affordable Care Act plans, said Charleson. One of these groups is based in the small capital city of Carson City, 30 miles south of Reno, where fewer than 60,000 people live. The rest are in the urban centers of Reno and Las Vegas.
Availability of navigators and their outreach tactics vary from state to state.
In Montana, which is larger than Nevada but has one-third the population, six people work as navigators. They cover the entire state, reaching Medicaid beneficiaries and people seeking help with coverage by phone or in person by traveling to far-flung communities. For example, a navigator in Billings, in south-central Montana, has worked with the Crow and Northern Cheyenne Tribes, whose reservations lie relatively nearby, said Olivia Riutta, director of population health for the Montana Primary Care Association. But officials struggle to reach northeastern Montana, with its Fort Peck Reservation.
Having navigators in rural communities to help people in person is an ongoing challenge the country faces, said Alker. But the unwinding circumstances make it an especially important moment for the role navigators play in guiding people through complex insurance processes, she said.
This became clear following a recent survey regarding what consumers encounter when independently searching for health coverage on Google. “The results are really concerning,” said survey co-author JoAnn Volk, a research professor and the founder and co-director of the Georgetown University Center on Health Insurance Reforms.
The researchers found that former Medicaid enrollees looking for health plans on the private market face aggressive, misleading marketing of limited-benefit products that don’t cover important services and fail to protect consumers from high health costs.
Researchers shopped for coverage using two profiles of consumers who were losing Medicaid coverage and were eligible for a plan with no premiums or deductibles on the ACA marketplace.
The team reported, though, that none of 20 sales representatives who responded to their queries mentioned that plan, and more than half pushed the limited-benefit products. The representatives also made false and misleading statements about the plans they were touting and misrepresented the availability or affordability of the marketplace plans.
The sales reps and brokers quoted limited plans that cost $200 to $300 a month, Volk said. Such an expense could prove unaffordable for consumers who may still be low-income despite being ineligible for Medicaid.
“If they can’t get to a navigator, I would not trust that they would get to their best coverage option in the marketplace, or to the marketplace at all, frankly,” Volk said.
Making a difficult problem more challenging, the federal government does not require states to break down Medicaid disenrollment data by county, making it harder for experts and researchers to track and differentiate rural and urban concerns. The Center for Children and Families does so with data from the Census Bureau, which Alker pointed out won’t be available until next fall.
A data point that will be important to watch as states continue the redetermination process, Alker said, is call center statistics. People in rural areas rely more heavily on that method of renewing coverage.
“Call abandonment rate” is one such statistic. CMS defines it as the percentage of calls that drop from the queue in two separate measures — calls dropped up to and including 60 seconds, and calls dropped after 60 seconds. In August, the agency sent a letter to the Nevada Department of Health and Human Services about its rate: An average of 56% of calls dropped in May, the first month after Nevada’s unwinding began.
The agency “has concerns that your average call center wait time and abandonment rate are impeding equitable access to assistance and the ability for people to apply for or renew Medicaid and CHIP coverage by phone and may indicate non-compliance with federal requirements,” said Anne Marie Costello, deputy director of CMS.
In the letter, Costello also cited the 45% of Medicaid enrollees whose coverage was terminated for procedural reasons in May.
All 50 states received letters about early data, but only Idaho, South Carolina, Texas, and Utah had higher disenrollment rates than Nevada, and no state had a higher rate of call abandonment.
Officials at Nevada’s Division of Welfare and Supportive Services said its call center, staffed by 277 family service specialists, receives more than 200,000 calls a month. A spokesperson said the phone system offers self-service options whereby customers can obtain information about their Medicaid renewal date and benefit amounts by following prompts. Because those calls aren’t handled by a case manager, they are considered “abandoned,” the spokesperson said, raising the rate even though callers’ questions may have been fully addressed.
People shopping around for coverage after a lapse might go into a panic, Madore said, and the best part of her job is providing relief by helping them understand their options after disenrollment from Medicaid or CHIP.
When people find out the wide range of free services navigators like Madore offer, they’re shocked, she said.
“They’re unaware of how much support we can provide,” Madore said. “I’ve had people call me back and they say, ‘It’s my first time using insurance. Where do I go to urgent care?’”
The annual U.S. Census Bureau report this week revealed a drop in the uninsured rate last year as more working-age people obtained employer coverage. However, this year’s end of pandemic-era protections — which allowed many people to stay on Medicaid — is likely to have changed that picture quite a bit since. Meanwhile, reports show even many of those with insurance continue to struggle to afford their health care costs, and some providers are encouraging patients to take out loans that tack interest onto their medical debt.
Also, a mystery is unfolding in the federal budget: Why has recent Medicare spending per beneficiary leveled off? And the CDC recommends anyone who isat least 6 months old get the new covid booster.
This week’s panelists are Emmarie Huetteman of KFF Health News, Margot Sanger-Katz of The New York Times, Sarah Karlin-Smith of the Pink Sheet, and Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Among the takeaways from this week’s episode:
The Census Bureau reported this week that the uninsured rate dropped to 10.8% in 2022, down from 11.6% in 2021, driven largely by a rise in employer-sponsored coverage. Since then, pandemic-era coverage protections have lapsed, though it remains to be seen exactly how many people could lose Medicaid coverage and stay uninsured.
A concerning number of people who have insurance nonetheless struggle to afford their out-of-pocket costs. Medical debt is a common, escalating problem, exacerbated now as hospitals and other providers direct patients toward bank loans, credit cards, and other options that also saddle them with interest.
Some state officials are worried that people who lose their Medicaid coverage could choose short-term health insurance plans with limited benefits — so-called junk plans — and find themselves owing more than they’d expect for future care.
Meanwhile, a mystery is unfolding in the federal budget: After decades of warnings about runaway government spending, why has spending per Medicare beneficiary defied predictions and leveled off? At the same time, private insurance costs are increasing, with employer-sponsored plans expecting their largest increase in more than a decade.
And the push for people to get the new covid booster is seeking to enshrine it in Americans’ annual preventive care regimen.
Congress returns from its August recess with a long list of things to do and not a lot of time to do them. The fiscal year ends Sept. 30, and it’s possible that lawmakers will fail to finish work not only on the annual appropriations bills, but also on any short-term spending bill to keep the government open.
Meanwhile, Medicare has announced the first 10 drugs whose prices will be negotiated under the Inflation Reduction Act of 2022. Exactly how the program will work remains a question, however. Even how the process will begin is uncertain, as drugmakers and other groups have filed lawsuits to stop it.
This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Alice Miranda Ollstein of Politico.
Among the takeaways from this week’s episode:
Hard-line Republicans are refusing to back even a temporary government spending bill, suggesting a government shutdown looms — with repercussions for health programs. While the Senate and House have come to intra-chamber agreements on subjects like community health center funding or even have passed spending bills, Congress as a whole has been unable to broker an overarching deal.
A coalition of House Republicans is falsely claiming that global HIV/AIDS funding through PEPFAR promotes abortion and is battling efforts to extend the program’s funding. PEPFAR is a bipartisan effort spearheaded by then-President George W. Bush and credited with saving millions of lives.
The PEPFAR fight underscores the dysfunction of the current Congress, which is struggling to fund even a highly regarded, lifesaving program. Another example is the months-long blockade of military promotions by a freshman Republican senator, Alabama’s Tommy Tuberville, a member of the Senate Armed Services Committee. His objections over an abortion-related Pentagon policy have placed him at odds with top military leaders, who recently warned that his heavy-handed approach is weakening military readiness.
The Biden administration recently announced new staffing requirements for nursing homes, as a way to get more nurses into such facilities. But how long will compliance take, considering ongoing nursing shortages? And the drug industry is reacting to the news of which 10 drugs will be up first for Medicare negotiation, with much left to be sorted out.
In abortion news, a Texas effort to block patients seeking abortions from using the state’s roads is spreading town to town — and, despite being dubiously enforceable, it could still have a chilling effect.
Also this week, Rovner interviews Meena Seshamani, who leads the federal Medicare program, about the plan to start negotiating drug prices.
Midwest KHN correspondent Bram Sable-Smith discussed the Eli Lilly news on insulin prices on “PBS NewsHour” and insulin prices on Slate’s “What Next” on March 1.
KHN contributor Andy Miller discussed Georgia’s legislative wrap-up including Medicaid work requirements on Georgia Public Broadcasting’s “Lawmakers” on Feb. 28. He also discussed health care for foster children on WUGA’s “The Georgia Health Report” on Feb. 3.
Senior KHN correspondent Julie Appleby discussed how the end of the public health emergency will affect costs for covid-19 vaccines, treatments, and masks on KMOX’s “Health Matters” on Feb. 25.
KHN correspondent Cara Anthony discussed the youngest victims of gun violence and those who dig their graves on America’s Heroes Group on Feb. 25.
KHN contributor Eric Berger discussed distracted driving laws and why Missouri still doesn’t have one on St. Louis Public Radio’s “St. Louis on the Air” on Feb 24.
With Medicare and Social Security apparently off the table for federal budget cuts, the focus has turned to Medicaid, the federal-state health program for those with low incomes. President Joe Biden has made it clear he wants to protect the program, along with the Affordable Care Act, but Republicans will likely propose cuts to both when they present a proposed budget in the next several weeks.
Meanwhile, confusion over abortion restrictions continues, particularly at the FDA. One lawsuit in Texas calls for a federal judge to temporarily halt distribution of the abortion pill mifepristone. A separate suit, though, asks a different federal judge to temporarily make the drug easier to get, by removing some of the FDA’s safety restrictions.
This week’s panelists are Julie Rovner of Kaiser Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of STAT News, and Lauren Weber of The Washington Post.
Among the takeaways from this week’s episode:
States are working to review Medicaid eligibility for millions of people as pandemic-era coverage rules lapse at the end of March, amid fears that many Americans kicked off Medicaid who are eligible for free or near-free coverage under the ACA won’t know their options and will go uninsured.
Biden promised this week to stop Republicans from “gutting” Medicaid and the ACA. But not all Republicans are on board with cuts to Medicaid. Between the party’s narrow majority in the House and the fact that Medicaid pays for nursing homes for many seniors, cutting the program is a politically dicey move.
A national group that pushed the use of ivermectin to treat covid-19 is now hyping the drug as a treatment for flu and RSV — despite a lack of clinical evidence to support their claims that it is effective against any of those illnesses. Nonetheless, there is a movement of people, many of them doctors, who believe ivermectin works.
In reproductive health news, a federal judge recently ruled that a Texas law cannot be used to prosecute groups that help women travel out of state to obtain abortions. And the abortion issue has highlighted the role of attorneys general around the country — politicizing a formerly nonpartisan state post. –And Eli Lilly announced plans to cut the price of some insulin products and cap out-of-pocket costs, though their reasons may not be completely altruistic: An expert pointed out that a change to Medicaid rebates next year means drugmakers soon will have to pay the government every time a patient fills a prescription for insulin, meaning Eli Lilly’s plan could save the company money.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too: