Mary Laske became an activist, philanthropist and strategist focused on supporting medical research.

This article was published on Thursday, January 6, 2022 in Kaiser Health News.

By Gabrielle Emanuel, WBUR    

The roots of the National Cancer Act can be traced to a small home in Watertown, Wisconsin. In the early 1900s, a girl named Mary tagged along when her mother went to visit their laundress, Mrs. Belter, who had breast cancer.

When they arrived, the woman was in bed, her seven children around her. She was terribly sick. That day, Mary was only around 4 years old, but she remembered it for the rest of her life.

"When I stood in the room and saw this miserable sight, with her children crowding around her, I was absolutely infuriated, indignant that this woman should suffer so and that there should be no help for her," she recalled decades later, in 1962.

That girl grew up to be Mary Lasker, who transformed her outrage into action. Lasker became an activist, philanthropist and strategist focused on supporting medical research.

Belter, who'd had her breasts removed, survived.

"I'll never forget my anger at hearing about this disease that caused such suffering and mutilation and my thinking that something should be done about this," Lasker recounted.

In the first half of the 20th century, cancer was misunderstood. It was widely considered a death sentence, and some people believed it was contagious and something to be ashamed of.

"It was a disease diagnosis that was whispered about and kept secret," said Ned Sharpless, director of the National Cancer Institute. Sharpless said that to protect a person's dignity, doctors commonly fibbed about someone's condition or said that "the patient died of old age."

Decades of advocacy — and scientific breakthroughs — have dramatically changed that. The U.S. government has spent more money on the fight against cancer than any other disease, and many cancers are far less deadly than they once were.

A crucial moment in this evolution was the president's signing of the National Cancer Act into law 50 years ago, on Dec. 23, 1971.

Launching a Crusade

For years, Mrs. Belter's illness remained vivid in Mary Lasker's mind. About 40 years later, in 1943, her cook also fell ill with cancer. As Lasker — a person with wealth and status — helped her employee navigate the healthcare system, she was shocked to discover that cancer care had not advanced much.

So Lasker started a crusade. In the 1940s, broadcasters wouldn't say "cancer" on the radio. She worked to change that, with the help of her husband, Albert Lasker, an advertising executive. The couple persuaded Reader's Digest to do a series of articles about cancer. And Lasker persuaded her friend behind the Ann Landers advice column to write about it.

Lasker, who died in 1994 at age 93, didn't just focus on changing the popular perceptions of cancer. She wanted to cure cancer, and that demanded a real investment in medical research.

"The amount of money that's being spent for medical research is … well, it's just piddling," Lasker told Edward R. Murrow on CBS in 1959. "You won't believe this, but less is spent on cancer research than we spend on chewing gum."

After the United States put a man on the moon, Lasker started calling for "a moonshot for cancer."

"She understood that this was a big problem and the solutions needed to be big. But Mary was willing to think big," said Dr. Claire Pomeroy, president of the Albert and Mary Lasker Foundation.

Lasker built her movement: lobbying Congress and making the most of her time on the social circuit. She was a frequent visitor to the White House, as a friend of President Lyndon Johnson and his wife, Lady Bird.

At the same time, new treatments were being pioneered only a few miles away, at the National Cancer Institute in Bethesda, Maryland. Dr. Robert Mayer was working there, just beginning his career in medicine.

"Every Sunday night, the planes would fly in with patients," Mayer recalled.

Those patients were young children who had acute leukemia and were traveling to the National Institutes of Health to receive their monthly doses of chemotherapy. They came from all over the country because only a handful of hospitals were then capable of aggressively treating cancer patients.

"My colleagues thought we were a little crazy, that we would be giving people 'cell poisons,' which is what chemotherapy was thought to be," said Mayer, now an oncologist at the Dana-Farber Cancer Institute in Boston and a professor at Harvard Medical School.

Chemotherapy was still experimental, but the doctors at the National Cancer Institute were getting results. For one pediatric leukemia, the chance of survival improved dramatically.

"It wasn't just that they were people — they were children, and they were children at an adorable age of 3 or 4 or 5," Mayer said.

As the stories of these surviving children trickled out in the 1960s, a sense of optimism took hold.

Persuading Congress to Go Big

By the late 1960s, Lasker felt things were moving too slowly and decided to increase the pressure on lawmakers by taking out targeted newspaper ads in key congressional districts.

"This absolutely shocked the people in the House because they never had ads before and people were calling up from their districts and sending telegrams, and it caused quite a little commotion," Lasker said in an interview for the Oral History Research Office at Columbia University Libraries.

She also pestered President Richard Nixon, and publicly. She paid for full-page ads in The New York Times and The Washington Post. Big letters screamed out from the page: "Mr. Nixon: You can cure cancer."

The decades-long campaign in research labs, in the halls of Congress, and in the media finally paid off. On Dec. 23, 1971 — at about noon — Nixon spoke to a crowd of over 100 people, including Mary Lasker, members of Congress, and prominent scientists and doctors.

"Hope and comfort, the relief of suffering and the affirmation of life itself — these are qualities which have traditionally been associated with the Christmas season," Nixon said in a press statement. "There could be no more appropriate time than this to sign into law the National Cancer Act of 1971."

After signing the bill, Nixon posed for the cameras, with members of Congress arranged behind his chair. Sen. Edward Kennedy of Massachusetts, the Democratic whip and chief sponsor of the bill in the Senate, stood directly behind the president, his hand on the back of the chair.

That moment reveals how support for medical research had become politicized, according to Robin Wolfe Scheffler, a historian of science at the Massachusetts Institute of Technology. In Scheffler's analysis, Nixon signed the bill, in part, to ensure that his support for health research would not be in question during the 1972 presidential race. Kennedy was not seeking the nomination, officially, but was widely considered a possible front-runner.

"Nixon embraces the war on cancer as a way of taking an issue away from his potential future rivals, not necessarily because he has any particular desire to do something about cancer," said Scheffler, author of "A Contagious Cause: The American Hunt for Cancer Viruses and the Rise of Molecular Medicine."

Regardless of Nixon's motivation, the public investment was significant, $1.6 billion (almost $11 billion in today's dollars). The National Cancer Act funded biomedical research, set up oncology training programs and built a nationwide network of cancer treatment centers.

Many people thought the cancer moonshot would lead to a cure in five years, in time for the country's bicentennial in 1976. But curing cancer would prove to be much harder than going to the moon.

"I think you have to admit two things about the National Cancer Act. On the one hand, it was visionary and transformative. It was one of the most important things the United States has ever done in terms of biomedical research," Sharpless said. "At the same time, we also have to admit that it was very naive."

America's bicentennial came and went, but cancer death rates continued to climb. News anchors questioned whether taxpayers' money was being wasted.

"People declared the war on cancer 'a medical Vietnam,'" Scheffler said.

A debate ensued about whether the National Cancer Act's focus on basic research was misguided if it wasn't leading to advances in treatment. Environmental activists argued that the emphasis should have been on prevention.

It took time for the research investment to pay off, Sharpless said. "All this basic biology was bubbling beneath the surface. It doesn't look like much was happening in terms of cancer outcomes," he said. "But a lot was happening in the … cancer research space."

Now, 50 years after the funds started flowing, "we really are in a time of rapid progress," Sharpless said.

Although 600,000 Americans die from cancer each year, the overall death rate for cancer has dropped by about a third from its peak in 1991. But the progress has been uneven.

For some cancers, the prognosis is still bleak. For example, the vast majority of people diagnosed with pancreatic cancer die within a few years. But for other types of cancer, there have been major medical advances. Death rates for colorectal cancer, cervical cancer and prostate cancer have declined more than 50%. And there have been advances in the treatment of lung cancer, breast cancer and melanoma, among others.

"We have made remarkable progress," said Dr. Ahmedin Jemal, an epidemiologist at the American Cancer Society. "But there is a certain segment of the population that is not really benefiting from the advances that we have made in the past five decades."

Significant gaps in cancer death rates remain along racial, economic and geographic lines. And insurance makes a big difference — people with consistent health insurance are more likely to survive cancer than people who are uninsured or experience disruptions in health insurance coverage.

Jemal pointed to policies that can help reduce cancer death rates, including smoke-free workplace laws, tobacco excise taxes and the expansion of Medicaid, the federal-state program that provides health insurance to low-income people. Jemal said some states in the South and Midwest that did not expand Medicaid were found to have slightly higher cancer death rates.

Advocates like Jemal say a goal for the future is to make sure all Americans — no matter where they live, what race they are or how much they earn — have access to 50 years of cancer progress.

This story is part of a partnership that includes WBUR, NPR and KHN.

This story relied on archived interviews with Mary Lasker conducted by the Oral History Research Office at Columbia University.

State officials this week officially placed the issue on the ballot after validating thousands of petition signatures.

This article was published on Thursday, January 6, 2022 in Kaiser Health News.

By Phil Galewitz  

South Dakota voters will decide in November whether the state should become the 39th to expand Medicaid under the Affordable Care Act, a move that would provide coverage to 42,000 low-income residents.

State officials on Monday officially placed the issue on the ballot after validating thousands of petition signatures.

For nearly a decade, the Republican legislature has opted against expansion, citing concerns about the federal debt and worries that Congress would eventually cut federal funding for the program. South Dakota Gov. Kristi Noem, a Republican, strongly opposes Medicaid expansion, even though the federal government picks up most of the cost.

To counter the Medicaid ballot initiative, GOP leaders are promoting a separate measure on the June primary ballot that, if passed, would require 60% voter approval for any new constitutional measures that increase taxes or cost the state $10 million or more. It would apply to the Medicaid initiative in November.

South Dakota is one of 12 states that have yet to expand Medicaid to all residents with annual incomes under 138% of the federal poverty level, or about $17,774. In South Dakota, adults without dependent children do not qualify for Medicaid regardless of income level.

Most states accepted the Medicaid expansion quickly after the ACA was implemented in 2014. After Republican lawmakers blocked widening eligibility, voters in Maine, Idaho, Utah, Nebraska, Oklahoma and Missouri approved Medicaid expansion at the ballot box in recent years. Only the Idaho vote scored more than 60% approval.

In the states without Medicaid expansion, collectively more than 2 million Americans are in the so-called coverage gap with incomes too high to qualify for Medicaid but too low to qualify for federal subsidies to help them buy coverage through the ACA insurance marketplaces.

President Joe Biden's Build Back Better legislation would expand federal subsidies to help those in that gap, but the effort has stalled since Sen. Joe Manchin (D-W.Va.) announced last month he would not support the bill. In a Senate evenly split along party lines with universal GOP opposition to the bill, Democrats cannot afford to lose a single vote.

South Dakotans Decide Healthcare, a coalition of patients' groups, health providers, faith leaders, educators and farmers, is leading the initiative to expand Medicaid in the state. The group is following a playbook used elsewhere, emphasizing how Medicaid expansion will bring in millions in federal dollars and help rural hospitals stay in business.

Zach Marcus, the campaign manager for South Dakotans Decide Healthcare, said the group is pushing to defeat the 60% voter threshold ballot initiative. But even if it passes, "if we need it, we are confident we can get to 60% support," he said.

"Medicaid expansion will be an economic driver for South Dakota," he said. "This is a healthcare issue, but it's also a common-sense dollars-and-cents issue."

South Dakota could be the lone state to face a Medicaid ballot initiative this year. Advocates have also targeted Mississippi but must wait for state officials to reinstate the voter initiative process there. An effort to get an initiative before Florida voters is still being evaluated, according to the Fairness Project, which helps organize Medicaid ballot initiatives, including the one in South Dakota. The Fairness Project is funded by the Service Employees International Union-United Healthcare Workers West, a California union.

Voter-backed referendums have helped bypass GOP opposition to Medicaid expansion, but results have varied. For example, as of early last month, 210,000 people had enrolled in Oklahoma while Missouri had added fewer than 20,000, following expansions approved in 2020 in both states. The Nebraska expansion was delayed for nearly two years by state officials after voters approved a ballot measure in 2018.

Phil Galewitz: pgalewitz@kff.org, @philgalewitz

The provision could bring better disease monitoring to rural and underserved parts of the state.

This article was published on Wednesday, January 5, 2022 in Kaiser Health News.

By Rachel Bluth  

SACRAMENTO, Calif. — California has become the first state to require health insurance plans to cover at-home tests for sexually transmitted infections such as HIV, chlamydia and syphilis — which could help quell the STI epidemic that has raged nearly unchecked as public health departments have focused on covid-19.

The rule, part of a broader law addressing the STI epidemic, took effect Jan. 1 for people with state-regulated private insurance plans and will kick in sometime later for the millions of low-income Californians enrolled in the state's Medicaid program.

By making it easier and cheaper for Californians to self-administer tests in the privacy of their homes, the provision could bring better disease monitoring to rural and underserved parts of the state, reduce the stigma patients experience when seeking care and give them more control over their health, say experts on infectious diseases.

"This is the first law of its kind, and I'd say it's kind of cutting-edge," said Stephanie Arnold Pang, senior director of policy and government relations for the National Coalition of STD Directors. "We want to bring down every single barrier for someone to get STI testing, and out-of-pocket cost is a huge factor."

But being first has its downsides. Because the concept of insurance coverage for home STI tests is so new, the state's Medicaid program, Medi-Cal, could not establish by Jan. 1 the billing codes it needs to start paying for tests. Federal regulators also haven't approved the tests for home use, which could make labs reluctant to process them. And a state analysis predicts most in-network healthcare providers won't start prescribing home tests for at least a year until they adjust their billing and other practices.

Nevertheless, the situation is urgent and requires action, said state Sen. Richard Pan (D-Sacramento), a pediatrician who wrote the law.

"We have children born in California with syphilis," Pan said. "You'd think that went away in the Victorian era."

Even before covid, sexually transmitted infections hit all-time highs in the U.S. and California for six years in a row, according to 2019 data from the Centers for Disease Control and Prevention. Rates of congenital syphilis, which babies contract from their mothers, illustrate the severity of the STI epidemic: Cases were up 279% from 2015 to 2019 nationally and 232% in California. Of the 445 cases of congenital syphilis in California in 2019, 37 were stillbirths.

The pandemic only worsened the problem because health departments were overwhelmed responding to the covid emergency, and stay-at-home orders kept people away from clinics.

In surveys of public health programs across the country since May 2020, the National Coalition of STD Directors found that most respondents — up to 78% in one survey — have diverted some of their STI workforces to test and monitor covid. A report that accompanied the most recent survey found that some STIs were "completely unchecked" due to reductions in clinic hours, diversion of resources, shortages of testing kits and staff burnout.

Some at-home STI tests screen for a single disease but other kits can collect and send samples to check for a variety of infections. Depending on the test, patients collect a drop of blood with a lancet, or swab their mouth, vagina, anus or penis.

Some tests require patients to send samples to a lab for analysis, while some oral HIV tests give results at home in a few minutes.

Ivan Beas, a 25-year-old graduate student at UCLA, was getting tested frequently as part of a two-year research study. When clinics closed during the pandemic, researchers sent him a home kit.

The kit, which tests for HIV, hepatitis C, herpes, syphilis, chlamydia, gonorrhea and trichomoniasis, was packaged discreetly and came with easy instructions. It took Beas about 10 minutes to prick his finger, swab his mouth and send the samples to the lab.

Beas wanted to continue screening himself every few months after the study ended, he said, but the kit he used retails for $289, which is out of reach for him.

The last time he went to a clinic in person, "I spent two hours waiting to even be seen by a doctor because of how busy they are," he said. Until Medi-Cal begins covering home tests, he said, he will have to find time to get tested for free at a Planned Parenthood clinic.

"If insurance were to cover it, I'd definitely do it more," he said.

Under California's new law, plans regulated by the state must cover home STI tests when ordered by a healthcare provider.  

Privately insured Californians can take advantage of the coverage immediately. How much they will owe out-of-pocket for the tests — if anything — depends on the type of plan they have, whether their provider is in-network, and if they fall into a category the federal government has designated for free screening.

Medi-Cal patients almost never face out-of-pocket expenses, but they will have to wait for coverage because the Department of Healthcare Services, which administers Medi-Cal, is working with the American Medical Association and the federal government to create billing codes. The reimbursement rates for those codes will then need federal approval.

The state doesn't know how long that process will take, according to department spokesperson Anthony Cava.

The rule does not apply to the millions of Californians whose job-based health insurance plans are regulated by the federal government.

Other states and organizations have experimented with at-home STI tests. The public health departments in Alabama and the District of Columbia send free kits to residents who request them, but neither jurisdiction requires insurance coverage for them. The National Coalition of STD Directors is sending free kits to people through health departments in Philadelphia; Iowa; Virginia; Indiana; Puerto Rico; and Navajo County, Arizona. The list of recipients is expected to grow this month.

Iwantthekit.org, a project of Johns Hopkins University, has been sending free kits to Maryland residents since 2004, and to Alaskans since 2011. The program is funded by grants and works with local health departments.

Charlotte Gaydos, co-founder of the project, said that requests for test kits during the pandemic nearly tripled — and that she would expand to every state if she could bill insurance the way the California law mandates.

The tests fall into a murky regulatory area. While they have been approved by the Food and Drug Administration, none have been cleared for use at home. Patients are supposed to collect their own samples within the walls of a health facility, and some labs may not analyze samples collected at home.

Public health officials cited other potential challenges: Patients may not have the same access to counseling, treatment or referrals to other services such as food banks that they would receive at clinics. And although patients are supposed to self-report the results of their tests to public health authorities, some people won't follow through.

Vlad Carrillo, 31, experienced such trade-offs recently. Carrillo used to get tested at a San Francisco clinic, where they could get counseling and other services. But Carrillo lost their apartment during the pandemic and moved about seven hours away to Bishop, the only incorporated city in rural Inyo County.

"Being away from the city, it took me a whole year to find a way to get tested," Carrillo said.

Carrillo eventually got the kit through the mail, avoiding the stigma of going to the clinic in Bishop, which is "more focused on straight stuff," like preventing pregnancy. Without the test, Carrillo couldn't get PrEP, a medication to prevent HIV.

"Going without it for so long was really hard on me," Carrillo said.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Rachel Bluth: rbluth@kff.org, @RachelHBluth

All told, 956 students received payments.

This article was published on Tuesday, January 4, 2022 in Kaiser Health News.

By Blake Farmer, Nashville Public Radio

NASHVILLE, Tenn. — Just before students at Meharry Medical College went home for Thanksgiving, Dr. James Hildreth, the school's president, emailed them a video message that he acknowledged seemed hard to believe. Or at least they had to give it a second listen.

"We'll gift each of you $10,000 in cash," he said, looking at the camera. "You heard me right."

They were told to expect a direct deposit the next day or pick up a check in person. Hildreth, an expert in infectious diseases who helped lead Nashville's pandemic response, explained that this gift with no strings attached was money from the CARES Act, a major covid-19 relief law passed by Congress in 2020. He asked only that they be "good stewards" of the windfall.

After deep consideration, Meharry's administration decided to give roughly a third of its CARES Act funding — $10 million — directly to its future doctors, dentists and public health researchers. All told, 956 students received payments.

Meharry's students had already been heavily involved in the pandemic response, staffing Nashville's mass covid testing and vaccination sites. But the money isn't so much surprise compensation for volunteer efforts as it is an investment in a future career — and an assist in overcoming financial hurdles Black students especially face to become medical professionals.

While Black Americans make up roughly 13% of the population, the Association of American Medical Colleges finds Black doctors account for just 5% of the nation's working physicians — a figure that has grown slowly over more than a century. And studies have found that Black patients often want to be cared for by someone whom they consider culturally competent in acknowledging their heritage, beliefs and values during treatment.

Meharry graduates more Black physicians than almost any other U.S. school. And half of its M.D.s enter the high-demand but lower-paying specialty of primary care.

"We felt that there was no better way to begin distributing these funds than by giving to our students who will soon give so much to our world," Hildreth said.

Cheers erupted in the library as students clicked the video link.

Andreas Nelson fell silent, he recalled later. He went to his banking app and stared in disbelief. "$10,000 was sitting just in my bank account. It was astonishing," he said. "I was literally lost for words."

The Chicago native is finishing a master's degree in health and science at Meharry with hopes of entering its dental school. The average student loan debt in the program totals more than $280,000. So, undoubtedly, 10 grand won't make much of a dent in the debt.

But the money in his pocket eases his top concern of making rent each month. Nelson said it feels as though he's being treated like an adult, allowing him to decide what his greatest needs are in getting through school.

"It's motivating," Nelson said. "Because that means they have trust in us to do with this money whatever the cause may be — whether it be student debt, investing or just personal enjoyment."

Across the board, students at HBCUs rely more on student loans than students at historically white institutions. Roughly 80% take out student loans, according to an analysis by UNCF, formerly known as the United Negro College Fund, and they borrow considerably more.

Meharry was founded a decade after the Civil War to help those who had been enslaved. But the 145-year-old institution has always struggled financially, and so have its students.

The reasons are rooted in the country's racist past, which has left the institutions with less money potentially available for scholarships than other universities. And students' families generally have less wealth to tap into since Black households across the country have averaged around $17,000 in net worth — about a tenth of the average for white families.                                                     

Meharry's average student debt is far higher than other area schools of medicine at Vanderbilt University and the University of Tennessee, representing both private and public institutions.

Virtually all colleges and universities received allotments under the CARES Act, but HBCUs have been much more aggressive about funneling substantial amounts directly to students, who tend to have greater need. More than 20 HBCUs have erased outstanding tuition balances. Some have canceled student fees.

But Meharry, one of the few stand-alone HBCU graduate schools, is a rare case in cutting checks for students.

"These young people are rising to medical school against all odds," said Lodriguez Murray, who leads public policy and government affairs at UNCF. "Of course, they have to borrow more because people who look like them have less."

During the pandemic, major philanthropists have taken new interest in supporting the few HBCU medical schools. Michael Bloomberg committed $100 million to four institutions, including Meharry, to help educate more Black doctors.

Students at Meharry can now apply for $100,000 scholarships. The $34 million from Bloomberg Philanthropies is also going toward other kinds of financial support.

The school is now offering, for no additional fee, expensive test-prep services through a Boston-based company, MedSchoolCoach. The service, which entails paying a doctor by the hour to help with studying, can cost thousands of dollars.

While the price is often out of reach for students tight on cash, acing the benchmark exams toward board licensure is key to landing coveted fellowships, qualifying for lucrative specialties or just finishing on time. And Meharry's four-year completion rate of roughly 70% is below most schools. The most up-to-date national average is around 82%.

For some, Murray said, a $10,000 windfall may make all the difference in whether they cross the finish line and become a doctor who can afford all their medical school debt.

"Many of those students are borrowing a lot of money to complete their dream, and to become relatively high earners in the future," Murray said. "The fact that these students are largely coming from lower socioeconomic backgrounds means that the funds that Meharry turned around and gave to the students are particularly impactful."

This story is from a partnership that includes Nashville Public Radio and KHN

Blake Farmer, Nashville Public Radio: bfarmer@wpln.org, @flakebarmer