Zika is a scary virus because of the terrible birth defects it can cause. Now scientists have a clearer sense of the size of that risk.

The U.S. Centers for Disease Control and Prevention identified 2,549 pregnant women with the Zika virus in Puerto Rico and other U.S. territories between Jan. 1, 2016 and April 25, 2017. The CDC found that 122 of these women — about 5 percent — gave birth to babies with birth defects such as small heads (known as microcephaly).

The federal health agency, which has been struggling to get clear information out of Puerto Rico about Zika, declined to say how many of those birth defects came from Puerto Rico.

But Dr. Anne Schuchat, acting director of the CDC, said she is confident that health officials in the territory are now fully reporting its cases to the federal health agency. Puerto Rico is not required to use the CDC definition when publishing its own figures, which have appeared to be out of step with expectations.

CDC will blend the Puerto Rico numbers with any cases reported from the U.S. Virgin Islands, American Samoa, and the Federated States of Micronesia and Marshall Islands for “an assurance of privacy,” Schuchat told reporters. The upshot is that the public will not be able to identify risks specific to any of these areas. Puerto Rico’s population accounts for more than 90 percent of the total of these territories.

Earlier this week, Puerto Rico, which has been struggling to attract tourists during the Zika outbreak, declared that the epidemic had ended. Schuchat agreed that the number of cases has fallen sharply since the peak of the epidemic. But in a telephone news conference Thursday, she said, “We don’t feel the period of risk is over.”

Another mosquito season is on the way, she noted.

Scientists have had trouble pinning down the risk of Zika to pregnant women. Estimates of birth defects have ranged from 1 percent of pregnancies to more than 10 percent. This latest study, published Thursday in Morbidity and Mortality Weekly Report, provides a sharper answer.

The study found that even infected women without symptoms of the disease were at risk of giving birth to babies with abnormalities.

Women whose infections were identified in the first trimester of pregnancy had a somewhat higher risk — 8 percent overall. The study found that women whose infections were identified later in pregnancy were also at significant risk for having a baby with birth defects.

Not all birth defects are immediately recognized at birth, Schuchat said, so it’s important for doctors to follow up with these babies. In addition to microcephaly, the children may have other brain malformations, eye problems and neurological damage.

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John Minor of Manhattan Beach, Calif., epitomized the active Californian. The retired psychologist was a distance runner, a cyclist and an avid outdoorsman, says his daughter, Jackie Minor.

“He and my mom were both members of the Sierra Club,” Jackie says. “They went on tons of backpacking trips, you know — climbing mountains and trekking through the desert. He was just a very active person.”

But in the autumn of 2014, he fell ill with terminal pulmonary fibrosis, a lung disease that his family says slowly eroded his quality of life.

So, on September 15, 2016, surrounded by his family, John Minor sipped his last drink: apple juice laced with a lethal dose of medication his doctor had prescribed for him.

“He lay down and went to sleep and he was in a coma for about two hours and then he passed,” Jackie says. “And it was — it was very peaceful.”

In the year since California’s End of Life Option Act took effect on June 9, 2016, at least 500 Californians have received life-ending prescriptions, according to newly released data collected by Compassion and Choices, a nonprofit advocacy group working to pass aid-in-dying laws nationwide.

The organization reports that, throughout California, nearly 500 hospitals and health systems, more than 100 hospice organizations and 80 percent of insurers now participate. The California law created a process that allows dying patients to ask their doctors for a lethal prescription that they can then take privately, at home.

“What the numbers are showing is that the law is working incredibly well,” says Matt Whitaker, who directs Compassion and Choice’s work in California and Oregon, which also has an aid-in-dying law. “It’s working as the lawmakers intended.”

Still, for a number of patients in California, finding a doctor willing to prescribe the life-ending drugs can be difficult, in part because the state’s law allows doctors to opt out of prescribing, even when the hospital where they work participates in the law.

“It’s a very nuanced decision,”saysDr. Elizabeth Dzeng, an assistant professor of hospital medicine at the University of California, San Francisco. She estimates that about three dozen patients have made the request so far at UCSF.

Dzeng says the decision to prescribe can be hard for many doctors.

“Even if they’re in support of aid-in-dying they don’t necessarily want to be the person identified as the go-to person for aid-in-dying because that’s a very different implication,” she says.

Dr. Stephanie Harman, medical director of palliative care services for Stanford Health Care, where she has closely followed the issue at Stanford Hospital and its affiliated clinics in the San Francisco Bay Area. Harman recently tracked 13 Stanford patients who received prescriptions for lethal drugs, and learned that half of them couldn’t get the drugs from their own doctor.

One reason, she says: “There is a certain stigma for being known as a physician who writes these prescriptions. There is in the field — in medicine — a question of whether this is an ethical act for a physician.”

Other hospitals and health systems statewide are also trying to get a sense of what their terminal patients are experiencing. At the University of California, Los Angeles, about 20 patients so far havereceived prescriptions — but only about half of them have taken the drugs, says Dr. Neil Wenger, a professor of medicine at UCLA and director of the UCLA Health Ethics Center.

Wenger has helped develop the UCLA protocol that guides doctors through the requirements of administering the medication to qualified, terminally ill patients.

Among the physicians he’s spoken with, there is a “whole range of preferences” regarding how and whether to participate in the law.

A “relatively small number” oppose the law, Wenger says. Many others, however, believe patients should have access to aid-in-dying medications, but don’t want to be involved themselves. Complying with the law requires physicians follow extensive legal guidelines and have conversations with patients that are often difficult.

“It raises a lot of feelings on the part of the doctor,” says Wenger. “It is something very, very different than what a doctor does — which is saving people . And it’s complicated. It takes a whole lot of time.”

Dr. Catherine S. Forest is one doctor who is committed to taking that time to assist patients who want the prescription.

She practices family medicine in the Stanford health system. Since the law passed, she’s assisted five patients who came to her after their own doctors refused to prescribe the medications.

Forest says what’s happening now in California reminds her of the 1970s, when abortion became legal. Even among doctors who agreed with Roe v. Wade, there was a reluctance to perform abortions.

“It takes a while for people to train, to feel comfortable and to provide,” she says. “And that was because it was not legal, and then it was legal — and there are very few instances where we do that in medicine.”

Aid-in-dying, she says, is at another of those transitional moments. It will take time, she says, for California to catch up with other states (like Oregon) that have well-established training resources to help doctors learn the process.

Until that happens, some terminally ill patients who want a lethal prescription may find it challenging to get one. That was John Minor’s experience.

After he learned his doctors would not prescribe the medicine, Minor’s family started scrambling.

“I started cold-calling — like, just different hospitals and different departments within different hospitals,” says Jackie Minor.

Ultimately, the family was able to enroll her father in a Kaiser Permanente plan where he received the prescribed medicine that he took last fall.

“Mentally he was ready,” says his widow, Sherry Minor. “It was an easy day for him.”

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

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In his high-stakes strategy to overhaul the federal health law, President Donald Trump is threatening to upend the individual health insurance market. But if the market actually breaks, could anyone put it back together again?

The question is more than theoretical. Since Jan. 20, the Trump administration has already acted to depress enrollment in Affordable Care Act plans, has instructed the IRS to back off enforcement of the requirement that most people have health insurance or pay a penalty and threatened to withhold billions of dollars owed to insurance companies. All of those actions make it more difficult for insurers to enroll the healthy people needed to offset the costs of the sick, who make it a priority to have coverage.

The president himself has made his strategy clear in interviews and tweets. “The Democrats will make a deal with me on healthcare as soon as ObamaCare folds — not long,” Trump tweeted March 28. “Do not worry, we are in very good shape!”

But the individual insurance market is not in such good shape.

A growing number of insurers are asking for double-digit premium increases or deciding to leave the market altogether. In the latest announcement, Anthem said Tuesday that it was pulling out of the Ohio marketplace, where it serves more than 10,000 customers, next year. And while most analysts say the market probably would eventually rebound, in the short term things could get messy.

“Is the administration doing what it needs to do to stabilize the market? No, they’re doing the opposite,” says Kevin Counihan, CEO of the insurance exchange program during the Obama administration.

Trump’s biggest weapon by far is refusing to reimburse insurance companies for billions of dollars in payments the law requires them to make to help policyholders with incomes up to 250 percent of the federal poverty level, about $30,015 for an individual and $61,500 for a family of four, afford their deductibles and other out-of-pocket payments. These “cost-sharing subsidies” are being challenged in an ongoing lawsuit filed by Republican House members against Health and Human Services in 2014, and Trump can effectively end them at any time by dropping the suit.

Meanwhile, major insurance companies like Aetna and Humana have already announced that they won’t participate in the health exchange market for 2018.

Other insurance companies have said they would like to stay in, but only if they are granted huge rate hikes, citing the uncertainty of whether the Trump administration will repay them for the cost-sharing discounts and whether it will enforce the health law’s “individual mandate” that requires most people to have coverage or pay a fine.

In Pennsylvania, for example, insurers are seeking premium increases of less than 10 percent for 2018 – but warn that if the mandate to have insurance is not enforced or cost-sharing reductions are not paid, those increases could balloon to 36 percent or more.

Those who follow the market closely say the exits and requests for large premium increases are no surprise. “It’s just been one thing after another in this market,” says Kurt Giesa, an actuarial expert at the consulting firm Oliver Wyman. He said if the administration follows through on its threat not to fund the cost-sharing subsidies for the rest of the year, “that could be the straw that breaks the camel’s back.”

Giesa pointed out that it’s not just insurance companies that would suffer if the individual insurance market is crippled. “That strategy of crashing the market has real human consequences,” he says. “There are 15 million-plus people relying on that.”

That group includes not only people who purchase insurance through the “health exchange” state marketplaces, but also those who purchase insurance on their own, usually because they earn too much to get federal assistance paying their premiums. Premium subsidies are available to those who earn less than 400 percent of the poverty level, about $48,240 for an individual and $98,400 for a family of four.

People who pay their own way are the ones getting hit hardest, says insurance industry consultant Robert Laszewski. “There is a horrific death spiral going on with the [non-subsidized] part of the market right now,” he says, because rate hikes are limited for those getting help from the government, but not for those paying the full premiums.

A major question is how hard would it be for the government to regain the trust of insurers as a reliable business partner, regardless of what changes are eventually made.

Counihan acknowledges that insurers felt they were treated unfairly even before the Trump administration took office, when Republicans in Congress prevented full payment of “risk corridor” funds that the law promised to insurers who enrolled more than their expected share of sick people. Insurers are still owed millions of those dollars, and many have sued the federal government to try to get the money.

Counihan said the first words out of the mouths of most insurance CEOs he met with were “we don’t trust you guys.”

Giesa says the government’s misbehavior goes back even further – to the fall of 2013, when the Obama administration allowed some consumers to keep their old plans. That effectively kept healthy people out of the new markets, “after companies had set their prices,” Giesa says, resulting in some big losses for insurance companies.

Despite the woes, insurance analysts say they doubt the individual market would stay down for long.

One reason, says Laszewski, is that for many nonprofit insurers serving the individual market as the insurer of last resort is part of their mission, unlike with big commercial insurers. Boards of Blue Cross Blue Shield plans and other nonprofits, he says, tend to be made up of representatives of “labor, the local hospitals, big employers. … They have community connections. So it’s going to take a lot to drive them off.”

Another reason insurers will likely return or work to remain in the individual market is that it’s part of the future of health care, says Counihan. With so many people now working for themselves in the “gig economy,” he says, selling insurance “is going to be more business-to-consumer than business-to-business.”

“This market could grow,” agrees Giesa. “And I don’t think [insurance companies] want to be left out completely from this market if there’s an opportunity to break even, or make a little money.”

In the end, says Counihan, regardless of what he considers the Trump administration’s “disorganized neglect, I think this market is here to stay.”

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

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Every Friday, Christine Crawford has a counseling session at a clinic at New York City’s Mount Sinai Health System as she moves ahead with plans for gender transition surgery later this year. In addition to the many medical and psychosocial issues, there are practical ones as well. So, Crawford was thrilled when a Mount Sinai representative told her they would assign a lawyer to help her legally change her name to Christine.

The lawyer filed her name-change petition with the court and helped Crawford with other steps, such as notifying her former spouse and publishing the name change in the newspaper. She gave Crawford information about what she needed to do to make the change official with organizations such as the Social Security Administration and the Department of Motor Vehicles.

Perhaps best of all, when Crawford graduated with a master’s degree in social work last month, her diploma had her new name on it.

“[The lawyer] was able to expedite the petition and the court date,” Crawford says. “She was a godsend.”

As health care systems continue to shift toward becoming comprehensive medical homes for patients, health care providers are increasingly incorporating lawyers into the team of professionals who are on hand to help with legal issues at no additional charge to patients.

Roughly 300 health care systems, children’s hospitals and federally qualified health centers have set up these programs, says Ellen Lawton, co-director of the National Center for Medical-Legal Partnership at George Washington University in Washington, D.C.

The pairing makes sense in many ways. Legal issues all too often can cascade into problems with bad medical outcomes. Lawyers might file for an order of protection from a violent spouse, help appeal an insurance claim denial or get involved in child custody, guardianship or power of attorney issues.

For Care Connections at Lancaster General Health/Penn Medicine in Lancaster, Pa., housing problems are a key area that requires legal expertise. The four-year-old program provides comprehensive primary care services for people with complex health and social needs, especially patients who are frequently hospitalized, says Dr. Jeffrey Martin, managing physician for the program.

For someone with severe asthma and other chronic medical conditions, “it’s hard to use inhalers and take 16 other medications if you’re living in the back of a car or on someone’s couch,” Martin says.

When someone is fighting eviction, has problems with federal housing subsidies, suffers a utility shut-off or has poor housing conditions, the staff members of Care Connections call on Catherine Schultz. She is a legal aid attorney with MidPenn Legal Services, which has a contract to work on such cases for Lancaster General Hospital.

Martin describes the case of one patient, a licensed practical nurse in her mid-30s who was diagnosed with multiple sclerosis. The woman lost her job because she could no longer work, and then her car was repossessed. She stopped taking her medications and couldn’t make it to her medical appointments.

Schultz worked to get this patient a federal housing subsidy and helped her apply for Social Security disability benefits, and then appeal the administration’s denial of benefits. They’re awaiting the results of the appeal.

In fee-for-service medicine, the hospital’s work traditionally was considered finished once patients were discharged, Lawton notes.

But health care has shifted toward value-based care that focuses on outcomes and avoiding preventable hospital readmissions. Now, “you are accountable for patients beyond the four walls of the hospital, and you have to think creatively about how to create stability for them,” Lawton says.

With that in mind, many health care systems are focusing on medical-legal partnerships that target patients who are high users of services.

“Once upon a time, the attitude of the provider was, ‘It’s not my problem that you have mold in your apartment,’ ” says Emma Kagel, manager of medical-legal partnerships at Denver-based Centura Health System. ” ‘I’m just going to keep pumping you full of steroids and give you an inhaler.’ ” That attitude, she says, doesn’t work with value-based care.

Funding is always a problem for these programs where demand far outstrips supply. They are frequently staffed by legal aid attorneys under contract to the health care providers. Some programs use private sector lawyers working on a pro bono basis.

Mount Sinai, whose program is just getting off the ground, is taking a hybrid approach. In addition to a grant from the Manhattan District Attorney’s Office to provide child and family law services, the hospital partnered with law firms and other organizations to provide transgender and end-of-life legal services on a pro bono basis.

Sena Kim-Reuter, president of the Mount Sinai Medical Legal Partnership, says she’s focused on identifying gaps in patients’ needs where she can offer assistance. “There’s no way to handle all of it,” she says.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Follow Michelle Andrews on Twitter @mandrews110.

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For years, says Corinne Bobbie, shopping in Arizona for a health plan for her little girl went like this:

” ‘Sorry, we’re not covering that kid,’ ” Bobbie recalls insurers telling her. ” ‘She’s a liability.’ “

On the day I visit the family at their home in a suburb north of Phoenix, 8-year-old Sophia bounces on a trampoline in the backyard. It’s difficult to tell she has a complex congenital heart condition and has undergone multiple surgeries.

“She’s a kid whose clock is ticking every day,” her mother says, “but she goes to school, she rides horses. She does everything a regular kid can do with a certain level of limitation.”

In the early years of Sophia’s life, the child’s pre-existing condition kept Bobbie and her husband, who runs a sandwich shop, on a constant quest for health coverage for Sophia. Her premiums alone were so expensive that the rest of the family often did without health insurance. The little girl’s medical bills were still huge, and the family racked up debt and lost their car and home.

Then the Affordable Care Act, also known as Obamacare, came along. In 2013, the Bobbies bought good health insurance for Sophia on Arizona’s exchange, for coverage to start the next year.

“For the first time in her life, we had a choice,” Sophia’s mom says. “I didn’t know what do. My head was spinning.”

Arizona’s federally run marketplace was a success early on. There were lots of insurers and multiple plans that consumers could choose from, including many policies with low premiums. But that didn’t last. This past year, when the couple tried to add coverage for themselves and their son, they couldn’t afford it.

“It’s more disappointing to be so in favor of something, but to have such animosity toward it at the same time,” Corinne Bobbie says. “I’m angry about it. Why can’t I have insurance, too?”

The family faced limited options — there was only one insurer to choose from in Maricopa County, where they live. The networks were narrow, meaning insurers didn’t offer a lot of doctors and facilities in their plans. Furthermore, the Bobbies were looking at hundreds of dollars more in premiums and a $6,000 deductible for each person on the policy.

On the one hand, the ACA had finally guaranteed that someone like Sophia Bobbie — with her pre-existing medical condition — could apply for insurance and switch policies without risk of being turned down. And yet the plans on the marketplace were unaffordable for the rest of the family.

The Bobbies are the kind of consumers that should be the target audience for Republicans intent on repealing the Affordable Care Act. But, so far, Corinne Bobbie is far from sold on the alternative the GOP is proposing — the American Health Care Act.

“It’s a bunch of garbage,” she says. And about the lawmakers who passed it: “They could be the heroes. And instead it just became this nonsense.”

Opponents of the effort to repeal Obamacare are tapping into this unease, running TV ads that accuse Republican moderates like Rep. Martha McSally, who represents Tucson, of voting for “a disastrous health care repeal bill.”

“They are trying to put her in league with the extreme, hardcore Republicans in Congress,” says GOP consultant Jaime Molera, who is a partner at Molera Alvarez.

Democrats think McSally and Sen. Jeff Flake, R-Ariz. — who are both up for re-election — are vulnerable. The politicians have a fine line to walk.

“It’s a balancing act between being aggressive in wanting to repeal Obamacare,” Molera says, “with the fact that there are a lot of components of it that people like.”

Those components include protections for pre-existing conditions and Medicaid expansion, which has covered more than 400,000 people in Arizona alone.

The replacement bill would scale back that expansion, and the proposed curtailment concerns many Republicans in Arizona, including Gov. Doug Ducey.

The major cuts to Medicaid, however, probably won’t survive in the Senate version, and Molera says that could actually help Flake.

“He doesn’t have to take that extreme position in order to get out of a Republican primary,” Molera says, “and then that affords him the opportunity to be more of a centrist running against the Democrats.”

Among Republican incumbents in Arizona, Flake is likely in the toughest race, but Democrats are even taking aim at Republicans in safer districts like conservative Rep. David Schweikert, who represents Scottsdale and is a member of the House’s conservative Freedom Caucus.

Schweikert says he voted for the GOP health plan in order to give states flexibility to transform Medicaid — through block grants, for example — even though that means less federal money for the state.

He admits his decision makes some in Arizona’s health care industry nervous.

“They are concerned because they are quite comfortable with the current Medicaid model instead of a model that would provide a lot more choices,” Schweikert says.

The state’s health care industry has warned that the GOP bill would result in more people showing up in the emergency room without insurance coverage, leaving hospitals — and, ultimately, consumers — to pick up the tab.

Schweikert also claims the bill will help salvage the state’s marketplace, which, he says, is “imploding.”

“We can lower the price so much for that 50 percent that’s healthy, that they’ll start to participate in the system, because that’s the only way the math works,” Schweikert says, adding that the ACA’s penalty system is not getting enough young people to join.

About 20 percent of people who signed up for Arizona’s marketplace are between the ages of 18 and 34, according to the Kaiser Family Foundation.

The GOP bill is expected to bring down the cost of some premiums, but prices would rise significantly for those who are older or have pre-existing conditions, according to the Congressional Budget Office.

Schweikert also predicts that, as configured right now, the insurance marketplace will not survive for much longer, given the exodus of insurers in recent years.

“Today, you’re lucky we have one,” he says, “and tomorrow, you may have zero.”

But Allen Gjersvig, who oversees enrollment for the Arizona Alliance for Community Health Centers, disagrees that the state’s insurance exchange is in crisis.

“We believe that the two insurance companies that are covering Arizona will be back next year with the same footprint,” Gjersvig says.

He also doesn’t expect Arizona to see the same dramatic rate hikes it saw last year, calling that an adjustment for underpricing in previous years.

But with the current uncertainty about what is in store for the health care law, insurers are having a tough time planning for the future.

Gjersvig says the biggest unknown is whether the Trump administration will withhold key payments known as cost-sharing reductions; these payments to insurers help subsidize coverage for low-income people. If insurers lose those, Gjersvig says, the insurance premiums for consumers will go up.

All this uncertainty is also a problem for Corinne Bobbie.

She says the debate over the ACA has become a political game in which her family and others have been forgotten. She has one overriding fear: “We are potentially in a position where this time next year, nobody in this house will have insurance,” Bobbie says. “If that happens, it’s going to be ugly. It’s going to be real ugly.”

And the political fortunes of elected officials in Arizona and across the U.S. may well depend on voters like her family getting the care they need.

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

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Nursing homes and hospitals need to do more to protect their patients from catching Legionnaires’ disease from contaminated water systems in their buildings, federal health officials warned Tuesday.

An analysis of more than 2,800 cases of Legionnaires’ that occurred in 2015 found that 553 definitely or possibly occurred in a health care facility such as a nursing home or a hospital, according to the Centers for Disease Control and Prevention’s Morbidity and Mortality Weekly Report. Sixty-six patients died from the disease.

“It’s widespread, it’s deadly and it’s preventable,” says Anne Schuchat, the CDC’s acting director.

Legionnaires’ disease is a potentially life-threatening form of pneumonia caused by Legionella bacteria, which can grow in water systems such as water storage tanks or pipes. The elderly and people who have weakened immune systems because they are sick are especially at risk.

The CDC says hospitals and nursing homes need to work harder to keep the bacteria from getting into places where patients might be exposed, such as showers, sinks and bathtubs, as well as medical equipment that uses water.

“We know if those facilities have an effective water-management system they can prevent these infections,” Schuchat says. “Nobody wants their loved one to go into a hospital or a long-term care facility and end up with Legionnaires’ disease.”

According to the report, 6,079 Legionnaires’ cases occurred nationwide in 2015. The analysis focused on 2,809 cases that occurred in 20 states and New York City. Among those, 468 were possibly associated with health care facilities and 85 definitely were.

Among the 85 cases that were definitely associated with health care facilities, 68, or 80 percent, were associated with long-term care facilities and 15, or 18 percent, were associated with hospitals.

Schuchat says she was surprised by the number of cases associated with health care facilities. They need to be especially attentive to the problem, given the vulnerabilities of their patients, she says.

“This analysis has uncovered a problem that is happening every day in health care facilities around the country and something we can do a lot about,” she says. “This report suggests that in many health care facilities, there’s really just an outbreak waiting to happen.”

For their part, hospitals and nursing homes say they are working to protect patients from Legionnaires’.

“America’s hospitals and health systems are committed to providing safe and healthy environments for the patients they serve,” Nancy Foster, vice president of quality and patient safety policy at the American Hospital Association, wrote in an email. “This includes ensuring the development and use of an effective water management program to help prevent the outbreak of diseases, including Legionnaires’ disease.”

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Each year, thousands of Americans miss their deadline to enroll in Medicare, and federal officials and consumer advocates worry that many of them mistakenly think they don’t need to sign up because they have purchased insurance on the Affordable Care Act’s marketplaces. That failure to enroll on time can leave them facing a lifetime of penalties.

Now Medicare has temporarily changed its rules to offer a reprieve from those late-enrollment penalties for anyone who kept the ACA policy after becoming eligible for Medicare Part B. For those 65 and older and for people with disabilities, Medicare Part B covers doctor visits and outpatient care.

Many of these people who missed the deadline “did not receive the information necessary … through the marketplace to make an informed decision” regarding Medicare enrollment, says a Medicare spokesman, explaining the policy change.

Autumn deadline to request a waiver of the late-enrollment penalty

People age 65 and older who have a marketplace plan or had one they lost or canceled, as well as people who qualify for Medicare because of a disability, but chose to stay with a marketplace plan, may qualify for the penalty waiver or a reduction. They’ll now have until Sept. 30 to request the waiver, according to federal health officials.

“This has been a problem from the beginning of the Affordable Care Act because the government didn’t understand that people would not know when they needed to sign up for Medicare,” says Bonnie Burns, a consultant for the consumer group California Health Advocates. “Once they had insurance, that relieved all the stress of not having coverage and then when they became eligible for Medicare, nobody told them to make that change.”

Lisa Grimes’ 49-year-old sister is one of those people. She receives Social Security disability benefits because of mental illness. She became eligible for Medicare automatically because of the disability benefits, but she had marketplace coverage at that time. (Grimes agreed to be interviewed as long as her sister was not identified.)

Grimes’ sister mistakenly opted to keep her marketplace plan and drop her Part B coverage, probably because her marketplace premium at the time cost half as much, says Grimes. That decision has kept Grimes, a St. Louis real estate lawyer, busy for months, unraveling the consequences.

Only after the sister’s $50 monthly premium ballooned to $360 did she and Grimes learn that marketplace customers lose their premium subsidies when they join Medicare.

The rules are tricky, and mistakes are common

Other Medicare beneficiaries have made similar mistakes by assuming they didn’t need Part B if they had a marketplace plan, or retiree coverage from a former employer, or health coverage through the Department of Veterans Affairs, or via a current employer with fewer than 20 workers. Beneficiaries didn’t realize that none of these is a substitute for Medicare Part B.

Grimes says her sister couldn’t afford the new marketplace premium and had to drop her plan last year. After that, the Social Security Administration denied her appeal to reinstate her Part B coverage with no penalty or wait period. Then she learned about the new Medicare waiver — from a Missouri counselor at the State Health Insurance Assistance Program.

It took several hours for Grimes to find the right letters and other documents needed to apply for the waiver, since her sister’s “filing system was a large shopping bag.” But with assistance from the Medicare Rights Center, a consumer advocacy nonprofit, her sister eventually received Part B coverage without a late fee or waiting period. It was retroactive, so she may even be reimbursed for the medical bills she paid last fall and winter when she had no insurance coverage for doctor visits.

Usually people need to sign up for Part B within three months before or after turning 65 if they aren’t getting job-based insurance, or when their job-based health insurance ends if they are older than 65, according to Medicare rules. Most people under 65 who receive Social Security disability benefits qualify for Part B after 24 months of benefits.

Under the ACA, people who qualify for Medicare will lose subsidies if they choose to remain in plans purchased on the federal or state exchanges. And being enrolled in one of those plans does not protect them from a permanent late enrollment penalty from Medicare.

Marketplace insurers, who are often the first to spot when a member is turning 65, are barred under the health law from canceling coverage because that member may qualify for Medicare, Burns says.

Last summer, Medicare officials began sending emails each month to about 15,000 people who have subsidized coverage through the federally run marketplace. The notices target people approaching their 65th birthday and tell them how “to avoid an unwanted overlap in Marketplace and Medicare coverage.” Officials also began contacting individuals who already have both Medicare and subsidized marketplace coverage, urging them to discontinue the latter.

How to get a waiver of the penalty

Yet many people have missed the warnings.

“These are very complex rules,” says Stacy Sanders, federal policy director at the Medicare Rights Center, which spearheaded an effort in 2015 by nearly 50 unions, insurance companies and seniors’ advocacy organizations to convince Medicare officials to address the problem.

“The lack of good notification was leading people down a dangerous path in terms of declining or delaying Part B,” Sanders says.

In March, Medicare began emailing letters about the temporary waiver to some people 65 and older who are enrolled in plans sold on the marketplaces run by the federal government. But others who may be eligible for a waiver are not getting those notices.

California, which has the largest state-run marketplace, serving 1.4 million consumers, is planning a similar information campaign. So are some other states that run their own marketplaces, including Connecticut, Massachusetts and New York.

People who may be eligible for the waiver, officially called “time-limited equitable relief,” must submit a request by Sept. 30. You can find information on how to apply on the Medicare Rights Center’s Medicare Interactive website or can call the center’s helpline at 800-333-4114.

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation. Find KHN’s Susan Jaffe on Twitter @SusanJaffe

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Several decades ago, Evan Nodvin’s life probably would have looked quite different.

Nodvin has his own apartment just outside Atlanta, in Sandy Springs, Ga., which he shares with a roommate, and a job at a local community fitness center. He also has Down syndrome.

“I give out towels, and put weights away, and make sure people are safe,” the 38-year-old says.

To get to and from work, Nodvin relies on rides from people who are hired to help him. He also has a counselor to help him do daily chores like grocery shopping, cleaning and cooking.

“My favorite thing to cook on Wednesdays — I like to cook turkey patties once a week,” he says. “And on Thursdays I make fish, and other days, I make other good stuff like spaghetti.”

Nodvin can live independently because of these services that are covered in Georgia under Medicaid, the government health insurance for people with disabilities and the poor. According to the Georgia Department of Community Health, the state spends about 6 percent of its Medicaid budget on services for people with developmental disabilities.

When Congress started to talk about making big changes to Medicaid in the health care bill in March, Nodvin went to Washington, D.C., with a group of advocates to lobby. He read a speech there, which he recites in his living room.

“As you can see, my life is very full. I work, live and play in the community. My dream is to continue this healthy and useful life. Thank you,” he reads.

But that dream is uncertain. The Congressional Budget Office estimates the proposed cuts to Medicaid in the Affordable Care Act repeal bill that passed the House of Representatives amounts to $834 billion over 10 years. In Georgia, more than half of the state’s Medicaid dollars go to the elderly or people with disabilities, according to the Georgia Department of Community Health.

In the House-passed bill, the federal government would give states a fixed amount of money based on what they’ve been spending, says Bill Custer, a professor of health administration at Georgia State University.

“In a state like Georgia, the impact would be immediate and fairly severe over time,” he says.

According to the Kaiser Family Foundation, Georgia ranked the second lowest in Medicaid spending per enrollee in fiscal year 2011. Georgia currently gets about two federal dollars for every one dollar the state puts in, but the new plan would give states a capped amount of funding for Medicaid.

Custer said Medicaid in Georgia might be okay in the beginning, but as health care costs rise, states will increasingly have to shoulder the burden.

“That means states are going to have to either find the money to maintain the program or shrink the program, either by covering fewer services, or covering fewer people, or both,” he says.

That worries Eric Jacobson, executive director of the Georgia Council on Developmental Disabilities, a state advocacy group.

“Medicaid is the lifeline for people with disabilities,” he says.

Jacobson says the community support services like those Nodvin gets under Medicaid are considered optional by states.

“Those are the kinds of services that we hope won’t get cut, but because of the reduction in funds, [they] might be the first on the chopping block,” he says.

He said services are already limited. According to the state Department of Community Health, nearly 9,000 people with intellectual or developmental disabilities are on a waiting list to get help in order to live on their own or in their communities.

Jacobson worries if there are budget cuts, more people might be forced into institutions.

“The way I look at it, institutionalization for people with developmental disabilities — it’s kind of like sending you to jail for no crime,” he says. “You can’t go out. I remember talking to somebody and he said, ‘I want to take my girlfriend to the movies. I can’t take my girlfriend to the movies because I’m not allowed to go off campus.’ “

Jacobson says there’s been a movement over the last several decades to allow people with disabilities to live in their communities. He says it’s about quality of life, and can save the state a lot of money.

In his Sandy Springs apartment, Evan Nodvin tabs through his CD collection. He has a Beatles poster hanging up in his room.

“I have Michael Jackson, Beatles, whatever… I got more of them here,” he says.

He’s lived on his own for the last 16 years, not long after graduating high school. He has a job, a girlfriend, an apartment. And as he said in his speech in D.C.: “I am able to be independent because I get help from my Medicaid waiver in my state of Georgia.”

That’s why Nodvin and his family will be watching what happens next in Washington, D.C.

This story is part of a reporting partnership with NPR, WABE andKaiser Health News.

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Nancy and Dan Gapinski of Glendale, Wis., remember a time when they couldn’t really communicate with their own son.

“He used to not really have any kinds of conversations with us. He did a lot of echoing things that we said, and scripting from movies,” Nancy Gapinski says as she and her husband wait for their son Ben’s school bus to arrive. “A lot of times kids didn’t know how to respond to him then, and didn’t know what he was trying to say and conversations wouldn’t really go anywhere.”

But that’s all changed. On a recent Friday afternoon, 10-year-old Ben hops off the bus, greets both his parents and starts chatting about his day.

“So what I did today was I had an extra recess today, and also I had to do two star math tests,” he reports. He says he did pretty well on those tests.

When Ben was a toddler he was diagnosed with an autism spectrum disorder. He barely communicated with his parents and needed constant monitoring to stay safe.

The Gapinskis needed help. They found a therapist to work with Ben for 24 hours a week, which cost more $50,000 a year. Dan’s workplace insurance paid for some of the costs, but not all.

So they turned to Medicaid.

Ben’s disability was severe enough – he was deemed by the state to require “an institutional level of care” — that he was eligible for Wisconsin’s children’s long-term care program, funded by Medicaid.

“They work with the child on basic language skills, trying to learn words, trying to do some intellectual exercises,” Ben’s father Dan recalls. “It eventually graduates into some back and forth conversation, and doing homework and doing things that are more like what normal kids do.”

While Medicaid is best known as a health care program for poor people, more than 80 percent of its budget goes to care for the elderly, the disabled and children, according to the Kaiser Family Foundation. Only 15 percent goes to health care for able-bodied adults.

The program has been growing in recent years and it now makes up almost 10 percent of federal spending. That’s why it’s the number one target in President Trump’s proposed budget, and figures prominently in the Republican proposal to replace the Affordable Care Act. Some estimates suggest the program could be cut by more than 1 trillion dollars over 10 years.

After three years of intense therapy, Ben now goes to his local public school and works on grade level in math and English. He no longer works with his private therapist or uses Medicaid benefits.

“We just decided not to reapply,” Nancy says. “The need had been met.”

President Trump and Republicans in Congress have proposed massive cuts to Medicaid’s budget over the next decade, and Nancy and Dan Gapinski worry that the services they used for Ben won’t be there if he needs them in the future, or be there for other families.

“I don’t know what Ben will need in his lifetime,” Nancy Gapinski says. “Our goals for him are very much like our goals for our daughter Zoe. We really want for them to be active, engaged citizens.”

Ben’s not the only one in the Gapinski home who has used Medicaid services. His grandmother Evelyn Benjamin is also a beneficiary.

Evelyn is 84. She’s had a few falls and depends on a walker to get around. She also has heart disease and uses three different inhalers.

“They take very good care of me,” Evelyn says, sipping tea in the living room surrounded by her family. “I’m very lucky to be one that can stay in my home, and know that I’m cared for.”

Evelyn has health insurance through Medicare. But after her husband suffered a stroke and needed constant care, she depleted her savings and now qualifies for Medicaid as well. It helps pay for her 12 prescription medications and, through a Medicaid-funded program called IRIS, she gets in-home help.

Wisconsin’s IRIS program is an example of how states tailor Medicaid to their own needs. It gives beneficiaries a budget to use for the services they need, and it allows people to hire whoever they want.

So Evelyn hired her daughter, Nancy, who gave up her full-time career to care for her mother and son. She works part-time from home, and supplements that income with $11.50 an hour for 20 hours a week caring for her mother. She says it’s helped keep them out of bankruptcy. And her hourly rate is a fraction of the going rate for such services from an agency. According to a 2015 study by Genworth, home health aides and homemaker services in Milwaukee cost an average of about $22 an hour.

“It’s just a big, big help for not only me, but for my daughter who worries about me constantly,” Evelyn says.

Nancy Gapinski worries that help may disappear under the proposed budget cuts. That’s because the services her family uses are considered optional under the Medicaid law. The program is required to pay for doctor visits, hospital care and even nursing home care. But in-home support services that Evelyn uses and therapies like those Ben received aren’t.

Dan Gapinski says his children love having their grandmother around. When they have nightmares they climb into her bed and they giggle with her in the living room.

“I don’t think we, as a society, appreciate the value of that,” he says. “There’s a lot of talk about entitlements and how that’s become a bit of dirty word. We don’t take the satisfaction in having made a greater society by making these kinds of situations possible.”

The day I visited the Gapinskis, Ben was excited to go on a sleepover at his aunt’s house. He was packing up pajamas, his Nintendo DS game, some comic books and Minecraft books.

As he heads for the door, his grandmother calls out for a hug.

“Give my love to Aunt Susie OK?” she says, while reaching her arms around Ben.

“Yeah, I’ll give your heart to Aunt Susie,” he replies with a laugh.

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