A proposal to simplify cervical cancer screening could end up missing some cancers, researchers and patient advocates say. And that could be especially true for minority women.

Latina and black women already have the highest rates of cervical cancer in the U.S., and more than half of women with the disease were not screened in the five years before their diagnosis, according to the Centers for Disease Control and Prevention.

In September, the influential U.S. Preventive Services Task Force issued draft recommendations for women ages 30 to 64, saying they could either get a Pap smear every three years or a human papillomavirus test every five years. (The task force did not recommend changes for any other ages.) That is a change from the 2012 guidelines, which recommended undergoing both the HPV and Pap tests every five years. And that’s what two dozen other medical organizations still recommend.

They include the American Cancer Society, the American College of Physicians and the American Congress of Obstetricians and Gynecologists. In response to the task force’s draft recommendations, ACOG and the American Society for Colposcopy and Cervical Pathology issued a joint statement reaffirming their support for testing for both every five years, or screening with a Pap alone every three years.

In 2014, 12,578 U.S. women were diagnosed with cervical cancer and 4,115 died, according to the CDC. But those numbers obscure demographic disparities.

“We are concerned about the women who basically will fall through the cracks if co-testing does not continue to be recommended and therefore reimbursed” by insurance companies, says Carolyn R. Aldigé, the president and founder of the Prevent Cancer Foundation, who wrote an op-ed supporting continued use of testing for both. “We’re particularly concerned about medically underserved women who have less access to screening in general and higher rates of cervical cancer.”

The task force has extended the deadline for comments on the proposed change until Friday at 8 p.m. ET. They can be filed online.

According to CDC data, Latina women have the highest rate of cervical cancer in the country. Black women have the second highest cancer rate but are more likely than Latina women to die of the disease. Limiting access to screening, especially for these groups, is “the wrong direction to go in,” Aldigé says.

In a statement to the task force from the National Latina Institute for Reproductive Health, Ann Marie Benitez, the organization’s senior director of governmental affairs and a cervical cancer survivor, pointed out the systemic barriers Latina women face in getting adequate preventive care and the research that supports testing for both.

“The largest retrospective study of cervical cancer screening strategies found that 1 out of 5 cases of cervical cancer was missed with primary HPV screening alone,” Benitez’s statement reads. “The USPSTF recommendations for screening must be revised to address the reality that many women at higher risk would be missed with less frequent and less comprehensive screening. Changes in this policy would put the lives of women of color further at risk.”

The task force relied on seven randomized controlled trials and five observational studies for their decision. Six of the randomized controlled trials were European — from England, Finland, the Netherlands, Sweden and two from the same group in Italy — and one was Canadian. Most of these countries have predominantly white populations, and only the Canadian study reported participants’ race or ethnicity. The task force also noted their evidence review had no trials that directly compared HPV testing alone with testing for both. Yet the draft recommendations include HPV testing alone as a screening option, something no other medical organizations currently recommend.

The trials’ testing methods also differ from tests used in the U.S. standard of care, according to Dr. Harvey Kaufman, medical director at Quest Diagnostics, a large medical testing company. Neither of the two HPV tests used in the studies is the one approved for primary HPV testing in the U.S., he says, and five of the seven studies used different types of Pap tests.

“Virtually every woman in the U.S. gets liquid-based cytology, which is much more sensitive and has different performance characteristics,” Kaufman says. Liquid-based cytology and conventional Pap cytology are both ways to analyze cervical cells; evidenceismixed on howtheydiffer. “So they end up with a core base of literature that doesn’t apply to the U.S.,” he says.

Kaufman also described inconsistencies in the way the task force selectively used data.

“In creating their model, they had to make assumptions about the sensitivity and specificity of cytology, HPV and co-testing,” Kaufman says. Sensitivity and specificity are two ways to measure a screening test’s accuracy. The task force used different studies for these numbers and then made calculations to adjust them for comparison.

“The mathematical gymnastics core to their model is not supported by statistical approaches in any textbooks I’ve seen,” Kaufman says. Even with their calculations, he says, an estimated 5 percent of women with cervical disease would be missed by HPV testing but identified with testing for both — and those are the women getting tested regularly.

“In real life, particularly in the U.S. where we have a more fragmented health system, you have to build a model that acknowledges the realities of how frequently people really do show up,” Kaufman says.

The task force listed the main harms of screening as false positives that could lead to excess follow-up tests and colposcopies. They acknowledge that “false-positive rates are higher among women younger than age 30 years compared with older women because of the higher incidence of transient HPV infection in younger women.” The populations in studies they used included women ages 21 to 65, but the recommendations for women ages 21 to 29 remain unchanged — Pap test alone every three years.

For the task force, says Aldigé, “the risk of overtreatment seems to outweigh the risk of missing cancers, whereas we feel that missing a significant number of cancers outweighs the risk of overtreatment.” She also worries about the effect of yet another change in recommendations, which have already undergone frequent changes in recent years.

“It throws women into a state of confusion,” Aldigé says. “The recommendations are constantly changing and women don’t know what to do, and sometimes when people don’t know what to do, they do nothing.”

Maureen Phipps, chair of obstetrics and gynecology at the Warren Alpert Medical School of Brown University in Providence, R.I., and a member of the task force, says the task force will take whatever time is necessary to read all public comments before deciding whether to adopt or revise their proposed recommendations.

Aldigé and Kaufman hope the task force will revert to keeping testing for both for women ages 30 to 64.

“One of the most notable success stories in all of health care is the fact that we have reduced the number of deaths from cervical cancer so dramatically,” Aldigé says. “We need to appreciate what screening has been able to accomplish in terms of public health. We can continue to bring those numbers down with co-testing.”

Tara Haelle is the co-author of The Informed Parent: A Science-Based Resource for Your Child’s First Four Years. She’s on Twitter: @tarahaelle

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California Gov. Jerry Brown defied the drug industry Monday, signing the most comprehensive drug price transparency bill in the nation that will force drug makers to publicly justify big price hikes.

“Californians have a right to know why their medical costs are out of control, especially when pharmaceutical profits are soaring,” Brown says. “This measure is a step at bringing transparency, truth, exposure to a very important part of our lives, that is the cost of prescription drugs.”

Brown says the bill was part of a broader push toward correcting growing economic inequities in the U.S., and called on the pharmaceutical leaders “at the top” to consider doing business in a way that helps those with a lot less.

“The rich are getting richer. The powerful are getting more powerful,” Brown says. “So this is just another example where the powerful get more power and take more… We’ve got to point to the evils, and there’s a real evil when so many people are suffering so much from rising drug profits.”

The drug lobby fiercely opposed the bill, SB 17, hiring 45 firms to try to defeat it and spending $16.8 million on lobbying against the full range of drug legislation.

The new law is intended to shine light on how drugs are priced, requiring pharmaceutical companies to notify the state and health insurers anytime they plan to raise the price of a medication by 16 percent or more over two years. And, companies will have to provide justification for the increase.

The legislation was supported by a diverse coalition, including labor and consumer groups, hospital groups and even health insurers, who agreed to share some of their own data under the bill. They will have to report what percentage of premium increases are due to drug prices.

“Health coverage premiums directly reflect the cost of providing medical care, and prescription drug prices have become one of the main factors driving up these costs,” says Charles Bacchi, CEO of the California Association of Health Plans. “SB 17 will help us understand why, so we can prepare for and address the unrelenting price increases.”

Drug companies criticized the governor’s move, saying the new law focuses too narrowly on just one part of the drug distribution chain and won’t help consumers afford their medicine.

“It is disappointing that Gov. Brown has decided to sign a bill that is based on misleading rhetoric instead of what’s in the best interest of patients,” says Priscilla VanderVeer, spokesperson for the drug industry association, the Pharmaceutical Research and Manufacturers of America (PhRMA). “There is no evidence that SB 17 will lower drug costs for patients because it does not shed light on the large rebates and discounts insurance companies and pharmacy benefit managers are receiving that are not always being passed on to patients.”

This law is part of a long game toward developing a stronger web of drug laws across the country, says Gerard Anderson, a health policy professor at Johns Hopkins Bloomberg School of Public Health who tracks drug legislation in the states. In that respect, it makes sense to start with the source of the drug prices: the drug makers themselves, he says.

“The manufacturers get most of the money — probably about three quarters or more of the money that you pay for a drug — and they’re the ones that set the price initially,” he says. “So they are not the only piece of the drug supply chain, but they are the key piece to this.”

California’s law will not stand alone, says state Sen. Ed Hernandez (D-West Covina), the bill’s author and an optometrist. “A lot of other states have the same concerns we have, and you’re going to see other states try to emulate what we did.”

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President Trump is poised to sign an executive order that he says will make it easier for people to join together as a group and buy health insurance from any state.

The president tweeted about his plans on Tuesday morning.

“Since Congress can’t get its act together on HealthCare, I will be using the power of the pen to give great HealthCare to many people — FAST,” he wrote.

The order would direct government agencies with jurisdiction over health insurance to find ways to allow consumers and small businesses to create associations to buy health coverage, according to The Wall Street Journal, which cited an unnamed Trump administration official.

Proponents of the move say that association health plans, which could be offered by trade groups, chambers of commerce or groups of small businesses, would not be bound by Affordable Care Act regulations that require insurance policies to cover everyone, no matter their health status, and to cover a specific set of benefits.

Conservatives have long advocated for these kinds of plans because they say they will boost competition and lower premiums. Kentucky Sen. Rand Paul argued for them on NPR’s All Things Considered in September.

“We believe that previous administrations have defined the law too narrowly, and under a new definition, there will be a wider expansion of AHPs, which will greatly lower costs to the consumer and provide more health insurance options,” Rand’s communications director Sergio Gor said in an email to NPR on Tuesday.

But health industry analysts say that if the policies don’t have to follow ACA rules, they would likely draw healthier people out of the traditional insurance market with the lure of low-premium policies that offer few benefits. That would leave the Obamacare markets with a sicker, more expensive population and could drive their premiums higher.

“If the executive order is as expansive as it sounds and association plans are allowed to cherry-pick healthy people, it could truly cause the individual insurance market under the ACA to collapse, leaving people with pre-existing conditions without access to affordable coverage,” says Larry Levitt, senior vice president of the Kaiser Family Foundation.

But he says exempting insurance plans from the ACA rules through regulation would be difficult.

“They would have to twist current laws into a pretzel to allow both individuals and small businesses to get insurance through associations exempt from the ACA’s rules and operating across state lines,” Levitt says.

Joseph Antos, a health policy scholar at the conservative American Enterprise Institute, agrees. “Trying to exempt these new associations from ACA rules that apply to all other plans doesn’t strike me as something that’s going to stand up in federal court,” Antos says.

Insurance markets are defined by local populations and local hospital networks, Antos says. There’s no reason to believe that an association of people spread across many states would be able to negotiate better deals with health care providers than insurance companies already do.

Health insurers have long opposed the idea, saying it will drive premiums higher for many consumers. “Association health plans would fragment and destabilize the small group market, resulting in higher premiums for many small businesses,” the National Association of Insurance Commissioners said in a position paper on its website.

Insurance premiums are based on the health status of the people who are included in the group being covered. Under the Affordable Care Act, those groups are defined by geography — everyone of the same age group in the same region pays the same premium for similar coverage.

Allowing some people to pull out of that group and buy less generous insurance could split the market between healthy people who don’t need much care and sicker people who use more. And that would drive up costs for those sicker people.

But Trump has long said the cost of insurance has risen too much under the ACA and that he wants to see people have more choices, including the choice to buy insurance with fewer benefits.

The order, which is expected later this week, would begin to fulfill Trump’s promise during his campaign to allow people to buy insurance “across state lines,” a goal that many conservatives say will boost competition. Insurance markets are currently regulated at the state level, and consumers can only buy policies that are approved in their state.

Trump said in the Oval Office on Tuesday that he’ll be “signing something probably this week that’s going to go a long way to be able to help a lot of the people who have been hurt on the health care. “They’ll be able to buy, they’ll be able to cross state lines and they’ll get great competitive health care and it will cost the United States nothing,” the president said.

Antos of AEI disagrees.

“I don’t see any real impact here.”

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Lori Wallace is sitting on a couch with her 11-year-old son and his new pet snake. It’s burrowing under his armpit, as if it were afraid. But Wallace says it’s not.

“If he was terrified, he would be balled up,” Wallace says. “See, that is why they are called ball pythons. When they are scared, they turn into a little ball.”

Wallace is dying of breast cancer, but a stranger couldn’t tell. She has a pixie haircut and a warm tan. She is vibrant and chatty and looks you right in the eyes when she talks. Wallace doesn’t shy away from what is happening to her. She shows me her cracked feet. They bleed from the chemotherapy pills she takes.

As Wallace’s cancer has progressed over the past seven years, she has become more critical of what she sees as excessive positivity in health care marketing. It’s everywhere: TV ads, radio commercials, billboards. The advertisements feature happy, healed patients and tell stories of miraculous recoveries. The messages are optimistic, about people beating steep odds. Wallace says the ads spread false hope, and for a patient like her, they are a slap in the face.

A couple of decades ago, hospitals and clinics did not advertise much to customers. Now, they are spending more and more each year on marketing, according to university professors who study advertising, and are keeping track.

Wallace, who lives in San Jose, Calif., says she used to be a hopeful person, someone who believed you could fight through any misfortune. Then she was diagnosed with breast cancer. Wallace was 39. Her son was 4. She couldn’t believe it.

The chemotherapy treatment makes her brain foggy, Wallace says. She is now in her fifth round. Her cancer is Stage 4 and has spread throughout her body. It’s going to kill her, she tells me.

“The median survival of a woman with metastatic breast cancer is 33 months,” Wallace says. “My 33 months would have been Dec. 6 last year. So I am on bonus time right now.”

Wallace pulls up an ad on her computer from UCSF Benioff Children’s Hospital, in San Francisco. An announcer intones, “Amid a thousand maybes and a million nos, we believe in the profound and unstoppable power of yes.”

There is a similar kind of optimism at the heart of a lot of the ad campaigns by health care providers — with slogans like “Thrive” and “Smile Out.” Wallace says the subtext of the ads is that people like her — who get sick and will die — maybe just aren’t being positive enough.

“I didn’t say ‘yes’ to cancer,” Wallace says. “I have tried everything I can. I have done clinical trials. I have said ‘yes’ to every possible treatment. And the cancer doesn’t care.”

Karuna Jaggar is executive director of Breast Cancer Action. She says health care providers are following in the footsteps of other companies.

“It’s the basics of marketing,” Jaggar says. “In order to sell products or services, you have to sell hope.”

She says health care advertisers are adopting the kind of optimistic messaging that really began in force with the pink ribbons and rosy depictions of breast cancer.

“Thirty years ago, breast cancer was the poster child of positive thinking,” Jaggar says. ” ‘Look good, feel better, don’t let breast cancer get you down. Fight strong and be cheerful while you do it.’ “

Back then, health care providers marketed to physicians more than consumers. The ads were drier, more factual, says Guy David, an economist and professor of health care management at the University of Pennsylvania.

“When the ads are more consumer-facing as opposed to professional-facing, the content tends to be more passionate,” David says.

The hospital ads Wallace is objecting to tug at emotions, just like other advertising that is trying to win over consumers. With increasing health care costs and choices, patients are shopping around for care. Tim Calkins is a professor of marketing at Northwestern University. These days, he says, hospitals have to sell themselves.

“Right now in health care, if you don’t have some leverage, if you don’t have a brand people care about, if you don’t have a reason for people to pick you over competitors — well, then you are in a really tough spot,” Calkins says.

Hospitals are spending more than ever on advertising, he says, and, as with other products, that advertising is filled with lots of promises. He says you don’t see the same promises in the pharmaceutical industry. Their ads are regulated by the Food and Drug Administration, which is why they have to list all those side effects and show scientific backing for their claims.

“Hospitals aren’t held to any of those [FDA] standards at all,” Calkins says. “So a hospital can go out and say, ‘This is where miracles happen. And here’s Joe. Joe was about to die. And now Joe is going to live forever.’ “

Lori Wallace is not going to live forever. Before cancer, she says, she would have been attracted to the messages of hope. But now, she says, she needs realism — acceptance of both the world’s beauty and its harshness. She wrote an essay about that for the women in her breast cancer support group.

The essay is titled “F*** Silver Linings and Pink Ribbons.” Wallace reads me the whole piece from start to finish. We are sitting at her kitchen table. Her son is nearby with his pet snake.

Toward the middle of the essay, Wallace writes, “My ovaries are gone, and without them my skin is aging at hyperspeed. I have hot flashes and cold flashes. My bones ache. My libido is shot and my vagina is a desert.” The essay is open, funny and unflinching, just like Wallace.

She reads me the final paragraph: “I will try to be thankful for every laugh, hug and kiss, and other things, too. That is, if my chemo-brain allows me to remember.”

“That’s what I wrote,” Wallace says. “That’s what I wrote. Brutal honesty.”

This story is part of NPR’s reporting partnership with KQED and Kaiser Health News.

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Iowa is one of 38 states that radically changed the way it runs Medicaid over the past few years. The state moved about 600,000 people on the government-run health program into care that is managed by for-profit insurance companies.

The idea is that the private companies would save the state money, but it has been a rocky transition in Iowa, especially for people like Neal Siegel.

Siegel is one of six disabled Iowans suing the state, alleging that Medicaid managed care, as it is known, deprives thousands of Iowans with disabilities the right to live safely in their homes.

Medicaid serves people with disabilities, low income people, and people in nursing homes. A combination of federal and state funds pays for it. It covers 74 million people across the country these days, about half of whom are in Medicaid managed care.

Siegel, a former financial consultant, was in a hit-and-run bicycle crash four years ago that left him with a severe brain injury. He uses a wheelchair and can barely speak.

“I would probably put Neal at about 98 percent cognitive of what’s going on around him, but unfortunately not able to articulate it,” says Siegel’s girlfriend, Beth Wargo. “So it’s being trapped inside your own body.”

After the accident, Siegel qualified for Medicaid. He lived in a rehabilitation center for a while, and the lawsuit, filed in U.S. district court in June, says he was the victim of abuse and neglect while living there.

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Neal Siegel and Beth Wargo, in a photo taken after Siegel’s accident in a hit-and-run bicycle crash left him with a severe brain injury.

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Eventually he moved home with Wargo, where he’s totally reliant on caregivers to assist him with all activities of daily life.

Then last year, Wargo says, they got a letter in the mail from AmeriHealth Caritas, the company that manages his care. Siegel’s budget for home help had been slashed by 50 percent, Wargo says. Siegel’s face lights up as Wargo talks about the lawsuit, and he manages to say, “Oh yeah,” when she mentions how happy they were that they could be part of it.

Cyndy Miller is the legal director with Disability Rights-Iowa, the advocacy group that spearheaded the lawsuit.

“The system is too stressed right now with the way it’s being managed and it’s not healthy for individuals with chronic or serious disabilities,” says Miller.

According to the lawsuit, the company claimed that spending on Siegel’s case was cut because it had exceeded a limit set in state policy. A spokesman for AmeriHealth Caritas said the company could not comment on ongoing litigation. The state has asked for the lawsuit to be dropped.

In addition to the suit, complaints about Medicaid from hospitals, doctors, and patients have spiked in Iowa.

Iowa’s Department of Human Services Director Jerry Foxhoven defends moving the entire Medicaid population to managed care. He says more taxpayer dollars will be saved under private management.

But he says his agency is willing to make changes, especially for people like Neal with serious disabilities.

“Everything’s always on the table. We’re always looking at everything to say how do we best serve the people we’re trying to serve and be the best stewards of taxpayer dollars,” Foxhoven says.

For their part, the three companies with contracts in Iowa say in statements that the first 18 months have been successful. But they also have said to state officials that reimbursement rates were based on deeply flawed cost estimates provided to them before the project began.

They are now negotiating to get millions of dollars more in state funding.

So where’s the savings? So far, no state has actually done a comprehensive review of whether private companies actually save Medicaid dollars, says Kelly Whitener, an associate professor with Georgetown University who studies managed care.

“You’d really need to be able to see, are you saving money overall or not, and if you are spending less money, are you suppressing services that are needed? Or are you really finding efficiencies and only delivering care that families really need?” says Whitener.

For the moment, those questions don’t have definitive answers.

Meanwhile, Iowa has to balance its books. Republican Governor Kim Reynolds had to tap more than $260 million of the state’s reserve fund this year, and officials expect next year’s budget will be even tougher to negotiate. Medicaid funding will likely be a large part of the discussion.

This story is part of a reporting partnership with NPR, local member stations and Kaiser Health News.

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