A recent study found that 80 percent of the city's black children live in neighborhoods with high concentrations of poverty, which often have poor access to quality medical care.
ATLANTA — While public safety commissioner Bull Connor’s police dogs in 1963 attacked civil rights protesters in Birmingham, Ala., leaders in Martin Luther King Jr.’s hometown of Atlanta were burnishing its reputation as “the city too busy to hate.”
Yet 50 years after the civil rights leader was killed, some public health leaders here wonder whether the city is failing to live up to King’s call for justice in health care. They point to substantial disparities, particularly in preventive care.
“We have world-class health care facilities in Atlanta, but the challenge is that we’re still seeing worse outcomes” for African-Americans, said Kathryn Lawler, executive director of the Atlanta Regional Collaborative for Health Improvement. That group includes representatives of more than 100 nonprofit organizations, governments, hospital systems and other health care providers working to improve access and care for minority communities.
“We did certain things here, we went through the civil rights era, and we did things like desegregation, but we just over the years never kept the conversation going,” said Tom Andrews, president of Mercy Care, a health center that serves mainly homeless Atlantans, the vast majority of whom are African American.
Among the problems:
— Atlanta has the widest gap in breast cancer mortality rates between African-American women and white women of any U.S. city, with 44 black patients per 100,000 residents dying compared with 20 per 100,000 white women, according to a study in the journal Cancer Epidemiology in 2016.
— It is the city with the nation’s highest death rate for black men with prostate cancer, with a rate of 49.7 deaths per 100,000 residents. The mortality rate for white men here is 19.3, the National Cancer Institute reports.
— There’s a 12-year or greater difference in life span among neighborhoods in Fulton County, of which Atlanta is the county seat. Those living in the city’s Bankhead or Northwest neighborhoods, which are predominantly black, fare worse when compared to those who live in affluent, mainly white Buckhead, researchers at Virginia Commonwealth University found.
— Large gaps in mortality exist between African-Americans and whites in such diseases as HIV, stroke and diabetes, according to the Georgia Department of Public Health.
African-Americans make up just over half of the city’s residents. But a recent study found that 80 percent of black children here live in neighborhoods with high concentrations of poverty, which often have poor access to quality medical care, while 6 percent of white children do. Several of the neighborhoods with predominately minority communities have poverty rates higher than 40 percent.
"I think we should be further along in Atlanta, but I think we should be further along in all cities in this country,” said Dr. David Satcher, a former U.S. surgeon general and now senior adviser at the Satcher Health Leadership Institute at Morehouse School of Medicine here.
The health gaps between African-Americans and whites in Atlanta or in any U.S. city are not due necessarily to shortcomings in the health care system, according to people who have studied the issue. Rather, they are the result of decades of discrimination.
“It’s a constellation of things,” said Thomas LaVeist, chairman of the department of health policy and management at the George Washington University's school of public health in Washington, D.C. “African-Americans couldn’t own land, wealth couldn’t transfer from one generation to the next. Those were advantages [for whites] that were formed decades ago.”
"The disparities are really national problems,” he added, “and there really is not a city that's spared."
The result has been, the experts said, lower incomes, lower levels of education, higher stress, unsafe neighborhoods, lack of insurance and a host of other social factors that combine, over the years, to create differences in quality of health.
It starts with a lack of preventive care, said Dr. Otis Brawley, chief medical officer of the American Cancer Society and a longtime Atlanta resident. In addition to not having insurance or money for care, many African-Americans lack trust in the health care system and see it as another part of American life that has let them down.
Ricardo Farmer, 57, has not been to a doctor for a checkup in almost 30 years, he said. He is uninsured, and his funds are limited. More than anything, however, Farmer said he does not trust the health care system.
“If I don’t have any symptoms, I feel like I don’t need to go,” said the tile craftsman.
Yet he has a back problem that causes him to miss work occasionally, and he has high blood pressure, which he self-treats by reducing his salt intake and giving up meat, and asthma, which sometimes forces him to the emergency room because he has trouble breathing.
An Abundance Of Health Care, For Some
Atlanta is a major health care hub, home to the federal Centers for Disease Control and Prevention, the American Cancer Society, the Arthritis Foundation, two schools of medicine and several universities that offer degrees in public health. And yet health care is still a scarce commodity in many poor neighborhoods.
“Atlanta spends $11 billion on health care in a given year, but much of that is misspent,” said Lawler. Too many patients end up in emergency rooms, for example, because they do not have a primary care doctor or seek treatment after their illnesses are much more advanced, she added.
In addition, after being diagnosed, getting treatment can be difficult for some, said Brawley. African-American women are nearly four times more likely than whites to forgo treatment for breast cancer, which can include a combination of surgery, chemotherapy and radiation, he said.
Adherence to the radiation regimen is particularly challenging, he explained, because a woman typically has to go five days a week for six weeks. That presents problems for those who must rely on public transportation or work in low-wage jobs that don’t offer generous sick leave benefits.
"It takes them 2½ hours to get there every day, and [the treatment] takes 45 seconds," Brawley said, when describing bus commutes for some residents. "So they figure it's not worth it.”
Those involved in seeking better care for Atlanta’s poor say the lack of insurance coverage also plays a huge role in the problem. Yet, that, too, is tied to race, since twice as many African-Americans than whites are uninsured in Georgia.
“One of the greatest barriers to care in all these states that didn’t expand Medicaid [under the Affordable Care Act] is lack of insurance,” said Brawley. “And it happened in all of the states of the ‘Old Confederacy.’ This is a huge racial insult.”
State Rep. Jason Spencer said Republicans’ opposition to Medicaid expansion “had nothing to do with race." He said whites living in parts of northern Georgia also have higher mortality rates. “The common denominator is education and finances. The race card is a worn-out, tiresome excuse."
'I Didn’t Want To Think About Bad Things'
Austin Gilmore, 60, is emblematic of the patients who don’t have a regular physician and therefore ignore their health needs.
He had a roofing business and lived with his wife in a four-bedroom house with two bathrooms. But he lost his bearings when she died in 2011 from kidney disease. Without insurance and with few economic resources, he didn’t know where to turn for help.
“I didn’t even know I was depressed,” said Gilmore. He started drinking and eventually lost his house and his business.
“I had no livelihood, no job, no place to live. I didn’t want to think about bad things, so I drank,” Gilmore said. He knew he was harming his health.
In September 2016, Gilmore decided he could not ignore his health issues any longer. He went to an emergency room and after several days of treatment was referred to Mercy Care for longer-term care. He has been sober for 19 months.
“I thank God for Mercy Care,” Gilmore said. “I can’t think of where I’d be without them.”
Dr. Kathleen Toomey, district health director for the Fulton County Board of Health, said the county has initiatives to help narrow the gaps. But just as the disparities were not caused by the health care system alone, the problems will not be solved solely by the health care system.
“The ownership is not just on public health, but across all sectors of the community that address social, economic and environmental factors that influence health," Toomey said.
Most Americans are happy with the insurance they buy on the individual market, yet those same people think the markets are collapsing before their eyes.
A poll by the Kaiser Family Foundation, released Tuesday, found that 61 percent of people enrolled in marketplace plans are satisfied with their insurance choices and that a majority say they are not paying more this year compared with last year’s premium costs.
Yet, more than half of the overall public — 53 percent — also think the Affordable Care Act’s marketplaces are “collapsing.” (Kaiser Health News is an editorially independent program of the foundation.)
Experts have warned that some policy actions supported by the Trump administration would undermine the market, including repealing the penalty for going without insurance and giving people the option to buy short-term plans. Such plans are often less expensive but cover fewer benefits. They are not automatically renewable, and insurers are able to charge people with medical conditions more — or exclude them altogether.
But only about one-fifth of people who obtain coverage on the individual market were even aware that the mandate penalty had been repealed as of 2019, according to the poll. It is still in effect this year.
Nine in 10 enrollees said they would still buy insurance without the penalty, and 34 percent said the mandate was a “major reason” they chose to buy insurance at all.
“They may have been prompted to buy the coverage in the first place because of the mandate,” said Sabrina Corlette, a professor at Georgetown University's Health Policy Institute. “But now that they’ve got it, they clearly value it.”
Most of the people who buy plans because they don’t get coverage through work or the government, 75 percent, said they bought insurance to protect against high medical bills, and 66 percent said peace of mind was a major reason.
In February, President Donald Trump eased some of the restrictions on short-term insurance plans, allowing them to cover people for 12 months instead of three.
Critics worried this alternative would draw people away from traditional insurance plans and weaken the individual market. According to the poll, though, only 12 percent of respondents buying on that market said they’d be interested in buying one of the short-term plans.
Georgetown’s Corlette cautioned that these numbers could change when people are faced with an actual choice next open enrollment season.
“If you look at how these things are marketed, your average consumer will not be able to tell that these products are any different from a traditional health plan,” she said.
Most people said they didn’t face a premium increase this year. Thirty-four percent said their premiums were “about the same” as last year and 23 percent said they actually went down.
That’s not surprising, said Joseph Antos, a resident scholar at the conservative American Enterprise Institute who follows the health industry. Many consumers saw their premium subsidies rise too.
Thirty-five percent of people said one of the major reasons they bought insurance was because government subsidies made it affordable.
The subsidies that people receive, Antos noted, went up to offset the premium increase in many cases, especially if consumers took the advice of experts and shopped around for coverage.
“They’re buying because they feel they need insurance and that their net premiums and deductibles add up to something they’re willing to buy,” Antos said.
The poll was conducted Feb. 15-20 and March 8-13 among 2,534 adults. The margin of sampling error is +/-2 percentage points for the full sample, +/-7 percentage points for all non-group enrollees and +/-9 percentage points for marketplace enrollees.
McKinley County, N.M., has the nation's highest rate of Medicaid enrollment, and people there say it is vital to battle daunting economic and public health challenges.
GALLUP, N.M. — On a crisp sunny day, Tyson Toledo, a precocious 5-year-old boy, hobbled into a private health clinic to have his infected foot examined.
Pediatrician Gayle Harrison told his mother to continue to apply antibiotic ointment and reminded them to come back if the swelling and redness worsened.
The appointment at Rehoboth McKinley Christian Health Care Services’ outpatient center comes at no charge for the Toledo family, who live 30 miles away on the Navajo Nation Reservation. That’s because Tyson is covered by Medicaid, the state-federal health insurance program for the poor.
New Mexico leads all other states in Medicaid enrollment, with 43 percent of its residents on the program. That’s partly because the state has a large Native American population, living in communities historically riven with poverty. The numbers offer an eye-popping snapshot of the promotion of Medicaid expansion since 2013: Nearly a third of the 900,000 New Mexico beneficiaries joined as part of the Affordable Care Act’s option to expand Medicaid.
Kaiser Health News is examining Medicaid’s role in the U.S. as the health care program comes under renewed fire from Republicans who generally want to put the brakes on the program, even as many Democrats credit the expansion with reducing the number of uninsured Americans to historic lows. Conservatives view the costs as prohibitive for state and federal budgets.
Nina Owcharenko, a senior research fellow in health policy with the conservative Heritage Foundation, said the enrollment boost is “not a positive story.” While the high enrollment underscores the pervasive poverty in New Mexico, it also signals surging costs for taxpayers, she said.
“I am growing more concerned about the cost of shifting Medicaid dollars to the federal government and without a budget cap on the program. … That is a dangerous fiscal course for the country,” she said.
“This is a problem that needs to be fixed. … We need to find a way that is more rational and more fiscally sustainable,” said Owcharenko, who was a top Health and Human Services official in 2016.
In Gallup, a city of about 23,000 people, Medicaid is as much a part of the fabric as Native American-crafted jewelry and green chile sauce. Recipients include the waitress at the downtown bar, the clerk at a loan store and the maid at the hotel.
And multigenerational families are common in Gallup and surrounding McKinley County. Tyson’s mother, grandmother, aunt and uncle also are enrolled in Medicaid.
Fifty-two percent of the county’s residents have coverage through the program. That’s the highest rate among U.S. counties with at least 65,000 people, according to a KHN analysis of Census data.
“Pretty much everybody is on Medicaid here,” said Libby Garcia, 36, who lives in a trailer overlooking downtown Gallup.
Garcia, who works as a custodian at a local Head Start agency, quit a second job cleaning businesses because that extra income would put her over the eligibility level for coverage. She can’t afford private insurance, and Medicaid gives her free care at a community health center and insulin and other medicines for her diabetes without out-of-pocket costs, she said.
McKinley, where more than 40 percent of the population lives below the federal poverty level ($12,140 for an individual), is the nation’s only county of at least 65,000 people in which more than half the population is on Medicaid. Nationwide, about 23 percent of Americans are enrolled, with more than 16 million people added since the expansion.
In McKinley County, many residents see Medicaid as vital. There’s no stigma around it, and enrollees and providers speak positively about it.
The heavy concentration of Medicaid in this high-altitude desert is a result of two factors: the high poverty rate and the Indian Health Service’s relentless work to enroll patients in the program.
Large swaths of McKinley County lie within the Navajo Nation, the largest Indian reservation in the United States. Nearly 80 percent of McKinley County’s 75,000 residents are Native American.
Medicaid enrollees in Gallup say the coverage has opened up new opportunities for them to get more timely care, especially surgery and mental health services. It has been vital in combating high rates of obesity, teen birth, suicide and diabetes, according to local health officials.
Outside a local Dollar Tree store, Linda James, 55, who sells jewelry she makes, said Medicaid paid for her son’s braces and her teenage daughter’s drug rehabilitation. “It’s a lifesaver for us,” she said, noting it helps her get quicker care than waiting at Indian Health facilities.
‘Safety Net’ For Indian Health Service
For the Gallup Indian Medical Center — the main Indian Health Service facility in the area — Medicaid has stoked the local budget and eased overcrowding. When patients on Medicaid are treated there, the center is reimbursed by the program. That money supplements the Indian Health Service’s annual federal grant, which is set by Congress.
Last year, Medicaid funding made up 34 percent of the center’s $207 million budget. Among all U.S. hospitals, Medicaid provided only 18.5 percent of revenue. “Medicaid has become the safety net for the Indian Health Service,” said John Ratmeyer, deputy chief of pediatrics at the Gallup Indian Medical Center. “It’s providing an extra pod of money to pay for services not within our hospital system.”
The medical center in Gallup looks like a relic of the 1960s, with fading-blue exterior walls, sandstone-colored outpatient trailers, cramped nursing stations and hard plastic seats in its emergency room waiting area. The hospital doesn’t have an MRI machine or any designated private patient rooms.
“One of our biggest challenges is just maintaining the building,” said Dr. Kevin Gaines, acting deputy clinical director at the hospital. The extra money coming from patients covered by Medicaid are helping the center pay for a badly needed $13 million modernization of its ER and urgent care unit, he said.
Another problem is a shortage of nurses and doctors, which leads to long wait times for patients — three or four months for primary care appointments or for dental services or eyeglasses. Some patients seeking specialized care need to go 140 miles to Albuquerque, a hardship for many Native Americans, some of whom don’t have access to cars or money for such transportation. But Medicaid will cover some non-emergency transportation for medical appointments.
State Feels The Pinch
The county has a host of medical challenges related to its economic problems. According to a 2016 report sponsored by Rehoboth McKinley, the county’s suicide rate for ages 10 and up is twice the U.S. average, alcohol-related deaths are nearly four times higher than the national rate, and teen birth rates are three times the U.S. average. Average life expectancy in McKinley is 74 years, four years less than the typical U.S. life span.
Without Medicaid covering doctor visits and substance abuse treatment, the situation would likely be worse, said Larry Curley, director of program development for Rehoboth McKinley.
This kind of care doesn’t come cheap. The federal government paid the full cost of the expansion through 2016, but now New Mexico and other states have to pick up a 5 percent share. To deal with rising costs, the state in 2017 began cutting the fees it pays hospitals, doctors and other providers.
Asked about her Medicaid health plan while at a popular doughnut shop, Corrine Rosales, 60, of Gallup, said it’s invaluable for her and her two young nieces, Mya and Destiny. Medicaid pays for her diabetes medications and helped Mya get treated for attention-deficit disorder.
“I don’t know what we would do without it,” she said.
In a refrigerator in the coroner's office in Marion County, Ind., rows of vials await testing. They contain blood, urine and vitreous, the fluid collected from inside a human eye.
In overdose cases, the fluids may contain clues for investigators.
"We send that off to a toxicology lab to be tested for what we call drugs of abuse," said Alfie Ballew, chief deputy coroner. The results often include drugs such as cocaine, heroin, fentanyl or prescription pharmaceuticals.
After testing, coroners typically make note of the drugs involved in an overdose on the death certificate — but not always.
Standards for how to investigate and report on overdoses vary widely across states and counties. As a result, opioid overdose deaths aren't always captured in the data reported to the federal government. The country undercounts opioid-related overdoses by 20 to 35 percent, according to a study published in February in the journal Addiction.
"We have a real crisis, and one of the things we need to invest in, if we're going to make progress, is getting better information," said Christopher Ruhm, the author of the paper and a health economist at the University of Virginia.
Data from death certificates move from coroners and medical examiners to states and eventually the Centers for Disease Control and Prevention, which publishes reports on overdose counts across the U.S. According to the CDC, more than 42,000 people died from opioid-related overdoses in 2016, a 30 percent increase from the year before.
But that number is only as good as the data states submit to the CDC. Ruhm said the real number of opioid overdose deaths is closer to 50,000. He came to the higher estimate through an analysis of overdoses that weren't linked to specific drugs.
On a death certificate, coroners and medical examiners often leave out exactly which drug or drugs contributed to a death. "In some cases, they're classifying it as a drug death, but they don't list the kind of drug that was involved," said Ruhm. In the years he reviewed in his paper, 1999 to 2015, investigators didn't specify a drug in one-sixth to one-quarter of overdose deaths.
Some states do worse than others. In 14 states, between 20 and 48 percent of all overdose deaths weren't attributed to specific drugs in 2016, according to a breakdown from FiveThirtyEight.
Many overdoses not linked to a specific drug were likely opioid-related, Ruhm said, so the lack of specificity leads to undercounting. According to Ruhm's earlier research published in 2017, Indiana's opioid overdose fatality rate is especially far off. He estimated the state's rate in 2014 was 14.3 overdose deaths per 100,000 people, twice as high as the rate reported that year.
In some states such as Indiana, independent county coroners investigate deaths. Coroners are usually elected, and they aren't necessarily medical professionals. Other states, though, have medical examiners, who are doctors. Some even have a chief medical examiner who oversees death investigations for the whole state.
"States that have centralized oversight with medical examiners tend to do better than those with coroners," said Ruhm.
In some places, death investigators don't list substances on a death certificate because they haven't tested for them. Brad Ray, a policy researcher at Indiana University's School of Public and Environmental Affairs, said toxicology reports cost hundreds of dollars each, which could strain county budgets.
Additionally, toxicology reports are currently optional for Indiana coroners. "So if you're not required to pay for it, and you're not required to report it, why would you?" said Ray.
Indiana's legislature recently passed a bill to standardize how coroners handle suspected overdoses, and Republican Gov. Eric Holcomb is expected to sign it. Starting in July, coroners will have to run toxicology screens and report the results to the state health department. The state will also help cover the added costs.
Data that is more accurate would likely make the opioid problem look worse as the numbers go up. But Ray said realistic data could help the state access federal funds to tackle the opioid epidemic and keep better track of drug problems.
"So we can see when trends are happening. We can see when there tend to be increases in cocaine and meth and decreases in opioids, if that happens," Ray said.
Marion County's Ballew learned at a conference last year that she could help improve the state's data. Her office was already getting toxicology reports for all suspected overdoses, and now her team will list the drugs involved in an overdose on the death certificate.
"We'll say 'drug overdose' or 'drug intoxication,' and then we identify the drugs," she said. "So if it's five drugs that have caused or contributed to the death, then we put those five drugs down."
Ballew said she plans to travel the state and train other coroners to do it the same way.
For years, confusion has surrounded the conditions under which older adults can receive physical, occupational and speech therapy covered by Medicare.
Services have been terminated for some seniors, such as those with severe cases of multiple sclerosis or Parkinson’s disease, because therapists said they weren’t making sufficient progress. Others, including individuals recovering from strokes or traumatic brain injuries, have been told that they reached an annual limit on services and didn’t qualify for further care.
Neither explanation stands up to scrutiny. Medicare does not require that older adults demonstrate improvement in order to receive ongoing therapy. Nor does it limit the amount of medically necessary therapy, for the most part.
The February congressional budget deal eases long-standing concerns by lifting a threat that some types of therapy might be restricted. But potential barriers to accessing this type of care remain. Here’s a look at how Medicare now covers such services.
Medical necessity. All therapy covered by Medicare must be deemed “reasonable and necessary to treat the individual’s illness or injury,” require the services of skilled professionals and be subject to medical oversight.
What isn’t a precondition for receiving services is ongoing improvement — getting measurably better. While this can be a goal for therapy, other goals can include maintaining a person’s current abilities or preventing deterioration, according to a groundbreaking legal settlement in 2013.
The implication for older adults: If your therapist claims that she can’t help you any longer because you aren’t making substantial progress, you may well have grounds for an appeal. At the very least, a discussion with your physician about reasonable goals for therapy is advisable.
Part A therapy services. Often, older adults require therapy after an untoward event brings them to the hospital — for instance, a stroke or a bad fall. If a senior has an inpatient stay in the hospital of at least three days, he or she becomes eligible for up to 100 days of rehabilitation, including therapy, in a skilled nursing facility under Medicare Part A.
Therapy services covered by Medicare Part A also can be obtained in an inpatient, hospital-based rehabilitation facility. In this setting, requirements call for therapy to be “intensive” — at least three hours a day, five days a week. Stays are covered by Medicare up to a maximum 90 days.
If a senior returns home after being in the hospital, he or she may receive therapy from a home health agency under Medicare Part A. To qualify for home health care, an older adult must need intermittent skilled services, such as those provided by a registered nurse or physical therapist, and be substantially homebound. Each episode of home health care can last up to 60 days and be renewed with a physician’s authorization.
“A lot of home health agencies believe, wrongly, that the home health benefit, including therapy services, is limited in duration to a couple of 60-day episodes,” said David Lipschutz, senior policy attorney at the Center for Medicare Advocacy. The bottom line for beneficiaries: You may have to advocate aggressively for the care you think you need and enlist your physician to intervene on your behalf.
Part B services. Physical, speech and occupational therapy are also covered by Medicare Part B in private practices, hospital outpatient clinics, skilled nursing facilities (when a patient’s Part A benefits have run out) and, less frequently, in people’s homes (when individuals no longer qualify for Part A home health services but still need assistance).
More than 5 million older adults and people with disabilities covered by Medicare receive “outpatient” therapy services of this kind each year. Care can last up to 90 days, with the potential for renewal if a physician certifies that ongoing services are necessary.
Questions about coverage for Part B therapy services have surfaced repeatedly since Congress authorized annual limits on the care that Medicare would cover in 1997 — a cost-saving move.
Faced with criticism, Congress delayed implementation of these “caps” for several years. Then, in 2006, it created an “exceptions” process that allowed caps to be exceeded, so long as therapy was judged to be medically necessary.
The exceptions process had two steps. First, a therapist had to request that services be extended when a patient reached an initial “cap” — set this year at $2,010. Then, another request had to be made when a patient reached another, higher threshold — initially set at $3,700 this year, but reduced to $3,000 in the budget legislation.
Both steps called for therapists to justify additional services by providing extra documentation. At the second, higher threshold, therapists also faced the prospect of intensive medical review of their practices and, potentially, audits.
At that point, therapists were often hesitant to pursue exceptions, which has made it difficult for patients with complex medical conditions to access care. Also, sometimes requests for exceptions have been denied, posing another barrier.
“We use the exceptions process, but we’ve tried to be very vigilant in who we used it for,” said Sarah Gallagher, a physical therapist at South Valley Physical Therapy in Denver, which specializes in treating people with complicated neurological conditions. “The risk is putting your clinic at risk for an audit if you ask for exceptions too often.”
With February’s budget deal, Medicare has gotten rid of the “caps” but retained the notion of “thresholds.” After billing for $2,010 in services (about 20 therapy sessions at $100 per visit) this year, a provider has to add an extra code to a bill. After billing $3,000, targeted medical reviews and the potential for audits can again be prompted.
Eliminating the caps should make things easier for older adults who need a time-limited course of therapy. But whether therapists will be wary about approaching the $3,000 threshold, with its extra administrative burdens and potential risks, remains to be seen. If so, patients recovering from strokes or brain injuries and those with complicated chronic conditions, who need intensive therapy for an extended period, could be affected.
“We fear that there still might be barriers to accessing care,” said Lifschutz, of the Center for Medicare Advocacy. “We suspect some providers will say I don’t want to deal with this process, and if I’m getting anywhere near that $3,000 threshold, I’m just going to give it up.”
“Theoretically, all the uncertainty we’ve been living with, related to the therapy caps and acceptable goals of therapy, has been resolved,” said Kimberly Calder, senior director of health policy at the National Multiple Sclerosis Society. “But only time will tell.”
California signed up an estimated 450,000 people under Medicaid expansion who may not have been eligible for coverage, according to a report by the U.S. Health and Human Services’ chief watchdog.
In a Feb. 21 report, the HHS’ inspector general estimated that California spent $738.2 million on 366,078 expansion beneficiaries who were ineligible. It spent an additional $416.5 million for 79,055 expansion enrollees who were “potentially” ineligible, auditors found.
Auditors said nearly 90 percent of the $1.15 billion in questionable payments involved federal money, while the rest came from the state’s Medicaid program, known as Medi-Cal. They examined a six-month period from Oct. 1, 2014, to March 31, 2015, when Medicaid payments of $6.2 billion were made related to 1.9 million newly eligible enrollees.
There were limitations to the California review, however. The audit extrapolated from a sample of 150 beneficiaries. The authors reported a 90 percent confidence level in their results — whereas 95 percent would be more common. That meant that the number of those ineligible could have been as low as 260,000 or as high as 630,000.
“If HHS has a strong reason to believe that California is systematically making enrollment errors, it would be helpful to show that in a more robust analysis,” said Ben Ippolito, a health care economist at the American Enterprise Institute, a conservative think tank. “The federal government should ensure that states are being good stewards of federal money.”
Nonetheless, the audit highlighted weaknesses in California’s Medicaid program, the largest in the nation with 13.4 million enrollees and an annual budget topping $100 billion, counting federal and state money. Medicaid covers 1 in 3 Californians.
The inspector general found deficiencies in the state’s computer system for verifying eligibility and discovered errors by caseworkers. The Medicaid payments cited in the report covered people in the state’s fee-for-service system, managed-care plans, drug treatment programs and those receiving mental health services.
California’s Department of Health Care Services, which runs Medi-Cal, said in a statement that it agreed with nearly all of the auditors’ recommendations and that the agency “has taken steps to address all of the findings.”
In a written response to the inspector general, California officials said several computer upgrades were made after the audit period and before publication of the report that should improve the accuracy of eligibility decisions.
Among the 150 expansion enrollees analyzed in detail, 75 percent, or 112, were deemed eligible for the Medicaid program in California. Auditors discovered a variety of problems with the other 38 enrollees.
During the audit period, 12 enrollees in the sample group had incomes above 138 percent of the federal poverty line, making them ineligible financially for public assistance, according to the report.
In other instances, beneficiaries were already enrolled in Medicare, the federal health insurance for people 65 and older or who have severe disabilities, and did not qualify for Medi-Cal. One woman indicated she didn’t want Medi-Cal but was enrolled anyway.
In 2014, the state struggled to clear a massive backlog of Medi-Cal applications, which reached about 900,000 at one point. Many people complained about being mistakenly rejected for coverage, or their applications were lost in the state or county computer systems.
California was one of 31 states to expand Medicaid under the 2010 Affordable Care Act. The health law established a higher federal reimbursement for these newly eligible patients, primarily low-income adults without children. After expansion started in 2014, the HHS inspector general’s office began reviewing whether states were determining eligibility correctly and spending taxpayer dollars appropriately.
In a similar audit released in January, the inspector general estimated that New York spent $26.2 million in federal Medicaid money on 47,271 expansion enrollees who were ineligible for coverage. (The sample size there was 130 enrollees.) Overall, New York had far fewer expansion enrollees and related spending compared to California.
Audits of other states’ records are planned.
“It is inevitable that in a big rollout of new eligibility for any public program there are going to be glitches in implementation,” said Kathy Hempstead, a health-policy expert and senior adviser at the Robert Wood Johnson Foundation. “The inspector general wants to make sure that states are being sufficiently careful.”
Nationwide, Medicaid, the state-federal health insurance program designed for the poor, is the country’s largest health insurance program, covering 74 million Americans. In the past year, Republican efforts to reduce Medicaid funding and enrollment have sparked intense political debates and loud protests over the size and scope of the public program.
The federal government footed the entire cost of Medicaid expansion during the first three years, instead of taking the usual approach of splitting the costs with states. Now, states are picking up more of the bill. Their share of the costs grows to 10 percent by 2020.
The California audit didn’t request a specific repayment from the state, but the findings were sent to the U.S. Centers for Medicare & Medicaid Services for review. CMS officials didn’t return a request for comment.
Donald White, a spokesman for the inspector general’s office, said the agency stood by the report’s findings and declined to comment further.
As she herded her two young sons into bed one evening late last December, Laura Devitt flipped through her phone to check on the routine blood tests that had been performed as part of her annual physical. She logged onto the patient portal link on her electronic medical record, scanned the results and felt her stomach clench with fear.
Devitt's white blood cell count and several other tests were flagged as abnormal. Beyond the raw numbers, there was no explanation.
"I got really tense and concerned," said Devitt, 39, a manager of data analysis who lives in New Orleans. She immediately began searching online and discovered that possible causes ranged from a trivial infection to cancer.
"I was able to calm myself down," said Devitt, who waited anxiously for her doctor to call. Two days later, after hearing nothing, she called the office. Her doctor telephoned the next day. She reassured Devitt that the probable cause was her 5-year-old's recent case of pinkeye and advised her to get tested again. She did, and the results were normal.
"I think getting [test results] online is great," said Devitt, who says she wishes she had been spared days of needless worry waiting for her doctor's explanation. "But if it's concerning, there should be some sort of note from a doctor."
Devitt's experience illustrates both the promise and the perils of a largely unexamined transformation in the way growing numbers of Americans receive sensitive — sometimes life-changing — medical information. A decade ago, most patients were informed over the phone or in person by the doctor who had ordered testing and could explain the results.
But in the past few years, hospitals and medical practices have urged patients to sign up for portals, which allow them rapid, round-the-clock access to their records. Lab tests (with few exceptions) are now released directly to patients. Studies estimate that between 15 and 30 percent of patients use portals.
The push for portals has been fueled by several factors: the widespread embrace of technology, incentive payments to medical practices and hospitals that were part of 2009 federal legislation to encourage "meaningful use" of electronic records, and a 2014 federal rule giving patients direct access to their results. Policymakers have long regarded electronic medical records as a way to foster patient engagement and improve patient safety. Studies have found that between 8 and 26 percent of abnormal lab results were not communicated to patients promptly.
Are portals delivering on their promise to engage patients? Or are these results too often a source of confusion and alarm for patients and the cause of more work for doctors because information is provided without adequate — or sometimes any — guidance?
Releasing results on portals remains "an answer with many questions," said Hardeep Singh, a patient safety researcher at the Michael E. DeBakey VA Medical Center in Houston. "There is just not enough information about how it should be done right," said Singh, who is also an associate professor at Baylor College of Medicine and one of the few researchers to study patients' experiences obtaining test results from portals. "There are unintended consequences for not thinking it through."
Although what patients see online and how quickly they see it differs — sometimes even within the same hospital system — most portals contain lab tests, imaging studies, pathology reports and less frequently, doctors' notes. It is not uncommon for a test result to be posted before the doctor has seen it.
That means that a patient may be the first to learn of a suspicious breast mass, a recurrence of cancer or possible kidney failure. At Johns Hopkins medical system in Baltimore, for example, results of a PSA test to screen for prostate cancer come with this disclaimer: "While Johns Hopkins providers check results frequently, you may see results before your provider has seen them."
Breast cancer specialist Lidia Schapira is an associate professor at the Stanford University Medical Center and editor-in-chief of Cancer.net, the patient information website of the American Society of Clinical Oncology. While she regards online access as beneficial, "the danger is that the patient may learn information they're unprepared to receive and may feel abandoned if they can't reach their doctor."
"Those are the Friday afternoon phone calls," she said, when "at 4:59 [p.m.] a patient has accessed the results of a scan and the doctor signs out at 5." The recipient of the anguished inquiry that follows is typically a covering doctor who doesn't know the patient or details of the case.
When Is Use Meaningful?
A recent study by Singh and his colleagues found that, like Devitt, nearly two-thirds of 95 patients who obtained test results via a portal received no explanatory information about the findings. As a result, nearly half conducted online searches. Many with abnormal results called their doctors.
That echoes a 2016 study led by researchers from the University of Pittsburgh. These scientists found that in addition to engaging patients, portal use may increase anxiety and lead to more doctor visits.
Among patients with low health literacy and numerical skills, confusion about the meaning of results is common. Many tests are reported in the same form that the doctor sees them, which even savvy patients may find "literally meaningless," observed Brian Zikmund-Fisher, an associate professor in the school of public health at the University of Michigan.
"In some situations we run the risk of patients misinterpreting that there is no problem when there is one, or assuming there's a problem when there isn't," said Zikmund-Fisher, lead author of a study that advocates the use of explanatory graphics to convey results. "What we need to be focusing on is giving patients context."
A year or so ago, Geisinger Health System in Pennsylvania began making most test results — but not biopsies or HIV screening — available to patients within four hours of being finalized.
"We essentially release results twice a day seven days a week with a four-hour lag," said Ben Hohmuth, Geisinger's associate chief medical informatics officer. The delay, he said, gives doctors time to review results. Patients who log on over a weekend can contact an on-call physician if they can't reach their own doctor. The goal of rapid release, Hohmuth said, is to "be patient-centered and transparent."
"The majority [of patients] want early access to their results, and they don't want it to be impeded" while waiting for doctors to contact them, Hohmuth said, even if the news is bad.
Patient reaction, he adds, has been "overwhelmingly positive"; the few complaints have come from physicians.
Health lawyer Kathleen Kenyon said she would have appreciated faster access to blood test results for her elderly mother, who had multiple medical problems including Alzheimer's disease. Kenyon, who managed and closely monitored her mother's condition, said she believes speedier access could have helped stave off a four-day hospitalization in the intensive care unit of a Washington hospital caused by her mother's plummeting sodium level.
"It is safer for patients to have more information," said Kenyon, formerly a senior policy analyst at the Department of Health and Human Services. "I was begging them to get my mother's lab information in earlier."
What Does This Mean?
At 46, writer Rebecca Esparza has survived Stage 4 ovarian cancer as well as thyroid cancer. She normally loves having round-the-clock access to her records and the ability to email her doctors.
But in 2016, immediately after extensive abdominal surgery at a hospital several hours from her home in Corpus Christi, Texas, doctors told her they suspected she had developed colon cancer. Confirmation would require further evaluation by a pathologist.
Esparza went home and waited, checking her portal repeatedly. A week later, she logged on to find a highly technical biopsy report she could not understand. A friend who is a nurse read it and told Esparza there was no mention of a malignancy. Two weeks after Esparaza left the hospital and a week after the report appeared on her portal, one of her doctors confirmed that she didn't have cancer after all.
"It was really traumatic and the one time I wish I hadn't had access," said Esparza, an advocate for the National Coalition for Cancer Survivorship.
Although Esparza considers her experience to be "a fluke," she notes similar confusion among other cancer patients in the online support groups she runs.
"People post their blood test and other results all the time and ask what it means," she said. Esparza said she intercedes by reminding participants "we're not doctors."
One way for a physician to provide guidance, said Stanford's Schapira, is for doctors to negotiate with patients in advance, particularly if they are concerned the news might be bad.
It is a strategy she employed at her previous job at Massachusetts General Hospital in Boston. "I would say, 'Let's do a scan and then schedule a visit two days later, and we can discuss the results,'" she said.
One Doctor's Experience
Mass General internist Katharine Treadway knows what it's like to obtain shocking news from an electronic medical record. The experience, she said, has influenced the way she practices.
More than a decade ago — long before most patients had portals — Treadway, with her husband's permission, pulled up the results of his MRI scan on a hospital computer while waiting to see the specialist treating his sudden, searing arm pain.
"It showed a massive tumor" and widespread metastatic disease, Treadway recalled. She never suspected that her 59-year-old husband had cancer, let alone a highly aggressive and usually fatal form of advanced lymphoma.
Treadway said she remembers intently checking the name and date of birth, certain she had the wrong patient, then rebooting the computer several times "like I was going to get a different answer."
"The difference is that I knew exactly who to call and what to do," said Treadway, whose husband has been cancer-free for more than a decade. "In the event of bad news, a doctor has to surround the patient with 'I am here for you and here's the plan.'"
Schapira agrees. "Clinicians have to start tackling the issues that have arisen as a result of instant access," she said.
Nationwide, 1 million immigrants work in direct care - as CNAs, personal care attendants or home health aides - according to the Paraprofessional Healthcare Institute
BOSTON — After back-to-back, eight-hour shifts at a chiropractor's office and a rehab center, Nirva arrived outside an elderly woman's house just in time to help her up the front steps.
Nirva took the woman’s arm as she hoisted herself up, one step at a time, taking breaks to ease the pain in her hip. At the top, they stopped for a hug.
"Hello, bella," Nirva said, using the word for "beautiful" in Italian.
"Hi, baby," replied Isolina Dicenso, the 96-year-old woman she has helped care for for seven years.
The women each bear accents from their homelands: Nirva, who asked that her full name be withheld, fled here from Haiti after the 2010 earthquake. Dicenso moved here from Italy in 1949. Over the years, Nirva, 46, has helped her live independently, giving her showers, changing her clothes, washing her windows, taking her to her favorite parks and discount grocery stores.
Now Dicenso and other people living with disabilities, serious illness and the frailty of old age are bracing to lose caregivers like Nirva due to changes in federal immigration policy.
Nirva is one of about 59,000 Haitians living in the U.S. under Temporary Protected Status (TPS), a humanitarian program that gave them permission to work and live here after the January 2010 earthquake devastated their country. Many work in health care, often in grueling, low-wage jobs as nursing assistants or home health aides.
Now these workers' days are numbered: The Trump administration decided to end TPS for Haitians, giving them until July 22, 2019, to leave the country or face deportation.
In Boston, the city with the nation's third-highest Haitian population, the decision has prompted panic from TPS holders and pleas from health care agencies that rely on their labor. The fallout offers a glimpse into how changes in immigration policy are affecting older Americans in communities around the country, especially in large cities.
Ending TPS for Haitians "will have a devastating impact on the ability of skilled nursing facilities to provide quality care to frail and disabled residents," warned Tara Gregorio, president of the Massachusetts Senior Care Association, which represents 400 elder care facilities, in a letter published in The Boston Globe. Nursing facilities employ about 4,300 Haitians across the state, she said.
"We are very concerned about the threat of losing these dedicated, hardworking individuals, particularly at a time when we cannot afford to lose workers," Gregorio said in a recent interview. In Massachusetts, 1 in 7 certified nursing assistant (CNA) positions are vacant, a shortage of 3,000 workers, she said.
Nationwide, 1 million immigrants work in direct care — as CNAs, personal care attendants or home health aides — according to the Paraprofessional Healthcare Institute, a New York-based organization that studies the workforce. Immigrants make up 1 in 4 workers, said Robert Espinoza, PHI's vice president of policy. Turnover is high, he said, because the work is difficult and wages are low. The median wage for personal care attendants and home health aides is $10.66 per hour, and $12.78 per hour for CNAs. Workers often receive little training and leave when they find higher-paying jobs at retail counters or fast-food restaurants, he said.
The country faces a severe shortage in home health aides. With 10,000 baby boomers turning 65 each day, an even more serious shortfall lies ahead, according to Paul Osterman, a professor at Massachusetts Institute of Technology's Sloan School of Management. He predicts a national shortfall of 151,000 direct care workers by 2030, a gap that will grow to 355,000 by 2040. That shortage will escalate if immigrant workers lose work permits, or if other industries raise wages and lure away direct care workers, he said.
Nursing homes in Massachusetts are already losing immigrant workers who have left the country in fear, in response to the White House's public remarks and immigration proposals, Gregorio said. Nationally, thousands of Haitians have fled the U.S. for Canada, some risking their lives trekking across the border through desolate prairies, after learning that TPS would likely end.
Employers are fighting to hold on to their staff: Late last year, 32 Massachusetts health care providers and advocacy groups wrote to the Department of Homeland Security urging the acting secretary to extend TPS, protecting the state's 4,724 Haitians with that special status.
"What people don’t seem to understand is that people from other countries really are the backbone of long-term care," said Sister Jacquelyn McCarthy, CEO of Bethany Health Care Center in Framingham, Mass., which runs a nursing home with 170 patients. She has eight Haitian and Salvadoran workers with TPS, mostly certified nursing assistants. They show up reliably for 4:30 a.m. shifts and never call out sick, she said. Many of them have worked there for over five years. She said she already has six CNA vacancies and can't afford to lose more.
"There aren’t people to replace them if they should all be deported," McCarthy said.
Nirva works 70 hours a week taking care of elderly, sick and disabled patients. She started working as a CNA shortly after she arrived in Boston in March 2010 with her two sons.
She chose this work because of her harrowing experience in the earthquake, which destroyed her home and killed hundreds of thousands, including her cousin and nephew. After the disaster, she walked 15 miles with her sister, a nurse, to a Red Cross medical station to try to help survivors. When she got there, she recounted, the guards wouldn't let her in because she wasn't a nurse. Nirva spent an entire day waiting for her sister in the hot sun, without food or water, unable to help. It was "very frustrating," she said.
"So, when I came here — I feel, people’s life is very important," she said. "I have to be in the medical field, just to be able to help people."
The work of a CNA or home health aide — which includes dressing and changing patients and lifting them out of bed — was difficult, she found.
"At the beginning, it was very tough for me," Nirva said, especially "when I have to clean their incontinence. … Some of them, they have dementia, they are fighting. They insult you. You have to be very compassionate to do this job."
A few months ago, Nirva was injured while tending to a 285-pound patient who was lying on her side. Nirva said she was holding the patient up with one hand while she washed her with the other hand. The patient fell back on her, twisting Nirva's wrist.
Injury rates for nursing assistants were more than triple the national average in 2016, federal labor statistics show. Common causes were falling, overexertion while lifting or lowering, and enduring violent attacks.
Nirva works with a soft voice, a bubbling laugh and disarming modesty, covering her face with both hands when receiving a compliment. She said her faith in God — and a need to pay the bills to support her two sons, now in high school and college — help her get through each week.
She started caring for Dicenso in her Boston home as the older woman was recovering from surgery in 2011. Like many older Americans, Dicenso doesn't want to move out of her home, where she has lived for 63 years. She is able to keep living there, alone, with help from her daughter, Nirva and another in-home aide. She now sees Nirva once a week for walks, lunch outings and shopping runs. The two have grown close, bonding in part over their Catholic faith. Dicenso gushed as she described spending her 96th birthday with Nirva on a daylong adventure that included a Mass at a Haitian church. At home, Dicenso proudly displays a bedspread that Nirva gave her, emblazoned with the word LOVE.
On a recent sunny winter morning, Nirva drove Dicenso across town to a hilltop clearing called Millennium Park.
"What a beautiful day!" Dicenso declared five times, beholding the open sky and views of the Charles River. As she walked with a cane in one hand and Nirva's hand firmly clasped in the other, Dicenso stopped several times due to pain in her hips.
"Thank God I have her on my arm," Dicenso said. "Nirva, if I no have you on my arm, I go face-down. Thank God I met this woman."
In addition to seeing Dicenso, Nirva works three shifts a week at a chiropractor's office as a medical assistant. Five nights a week, she works the overnight shift, from 11 p.m. to 7 a.m., at a rehabilitation center in Boston run by Hebrew SeniorLife. CEO Louis Woolf said Hebrew SeniorLife has 40 workers with TPS, out of a total of 2,600.
It's not clear how many direct care workers rely on TPS, but PHI calculates there are 34,600 who are non-U.S. citizens from Haiti, El Salvador, Nicaragua (for which TPS is ending next year) and Honduras, whose TPS designation expires in July. In addition, another 11,000 come from countries affected by Trump's travel ban, primarily from Somalia and Iran, and about 69,800 are non-U.S. citizens from Mexico, PHI's Espinoza said. Even immigrants with secure legal status may be affected when family members are deported, he noted. Under Trump, non-criminal immigration arrests have doubled.
The "totality of the anti-immigrant climate" threatens the stability of the workforce — and "the ability of older people and people with disabilities to access home health care," Espinoza said.
Asked about the impact on the U.S. labor force, a DHS official said that "economic considerations are not legally permissible in TPS decisions." By law, TPS designation hinges instead on whether the foreign country faces adverse conditions, such as war or environmental disaster, that make it unsafe for nationals to return to, the official said.
The biggest hit to the immigrant workforce that cares for older patients may come from another program — family reunification, said Robyn Stone, senior vice president of research at LeadingAge, an association of nonprofit groups that care for the elderly. Trump is seeking to scrap the program, which he calls "chain" migration, in favor of a "merit-based" policy.
Osterman, the MIT professor, said the sum of all of these immigration policy changes may have a serious impact. If demand for workers exceeds supply, he said, insurers may have to restrict the number of hours of care that people receive, and wages may rise, driving up costs.
"People aren’t going to be able to have quality care," he said. "They’re not going to be able to stay at home."
But since three-quarters of the nation’s direct care workers are U.S. citizens, then "these are clearly not 'jobs that Americans won’t do,'" argued David Ray, spokesman for the Federation for American Immigration Reform, which supports more restrictive immigration policies. The U.S. has 6.7 million unemployed people, he noted. If the health care industry can’t find anyone to replace workers who lose TPS and DACA, he said, "then it needs to take a hard look at its recruiting practices and compensation packages. There are clearly plenty of workers here in the U.S. already who are ready and willing to do the work.”
Angelina Di Pietro, Dicenso's daughter and primary caretaker, disagreed. "There's not a lot of people in this country who would take care of the elderly," she said. "Taking care of the elderly is a hard job."
"Nirva, pray to God they let you stay," said Dicenso, sitting back in her living-room armchair after a long walk and ravioli lunch. "What would I do without you?"
The stakes over DACA are particularly high for those who have bet everything on professions that require high-cost educations and several years of training.
Among the young people known as "Dreamers," Ever Arias belongs to a select group.
Of the roughly 700,000 unauthorized immigrants who have temporary but tenuous protection from deportation, only 99 are in medical school. Fewer still have made it to their final year.
Arias is one of them and, come June, will start his medical residency — the on-the-job training he needs to become a doctor.
What's not clear is whether he'll be allowed to finish and, ultimately, practice in the United States.
"We're at the mercy of the government at this time," said Arias, 27, who will graduate this May from Loyola University Chicago's Stritch School of Medicine.
Last Friday, Arias got great news. On Match Day, when 31,000 medical students nationwide found out where they will be trained as residents, he learned he would be heading to Southern California, where he was raised. His three-year residency will be in internal medicine, and his goal is to practice in underserved communities that need bilingual doctors, he said.
But at this pivotal moment in his medical career, Arias must focus both on his academic future and his legal one. In September, the Trump administration announced it would end the Deferred Action for Childhood Arrivals (DACA) program, setting off an ongoing political and legal battle that could overshadow the careers of immigrant doctors in training.
The tug-of-war has left Dreamers — the name given to people brought illegally into the U.S. as young children — wrestling with apprehension and uncertainty. The stakes are particularly high for those like Arias, who have bet everything on professions that require high-cost educations and several years of training. The end of the DACA program could mean the end of their careers in the United States.
"The biggest fear I have is that one day everything I've worked for will be taken away," Arias said.
President Barack Obama created DACA in 2012. The program allows qualified young people to obtain temporary work permits, which Arias and other Dreamers need to complete their training and advance in their careers.
The future of DACA is tied up in courts. Earlier this year, federal judges in California and New York temporarily blocked Trump's move to terminate the program, and his administration is appealing.
For now, Dreamers can reapply for the status every two years, but there's no guarantee how long that will last.
"Without DACA, there is very little possibility that medical students will be able to fulfill their profession," said Betzabel Estudillo, of the California Immigrant Policy Center. This is of particular concern in the medical field where there is an urgent need for a "robust and diverse workforce," she said.
Ignacia Rodriguez, immigration policy advocate at the National Immigration Law Center, called Arias and other Dreamers "pioneers."
"They've had this ambition before DACA was around and they'll continue to work towards it even if DACA were to be taken away," she said. "But they deserve stability."
After months of applications and interviews, Arias was excited that he "matched" with his first choice, a residency program in Southern California. He declined to name the institution, citing the uncertain political situation.
Arias, who was born in Mexico and brought to the U.S. at age 6, grew up in Costa Mesa, Calif. He graduated from the University of California-Riverside in 2012 and, after a two-year break, started medical school.
When the Trump administration announced its plan to rescind DACA last year, Arias was in the middle of applying to residency programs. He worried that they might reconsider whether to continue accepting DACA recipients because they could run the risk of losing their trainees midstream if DACA were eliminated.
But some residency programs aren't letting the uncertainty cloud their decisions.
"We want programs to be able to choose from the best and brightest and to be able to select applicants who would be best suited for their institutions and communities, regardless of status," said Atul Grover, the executive vice president at the Association of American Medical Colleges, which represents medical schools and teaching hospitals.
Residency programs take a risk with every student they admit, not just Dreamers, added Sunny Nakae, the assistant dean for admissions at Loyola's medical school. "The threat that looms over DACA obviously adds a more foreseeable risk," she said. But "there's no guarantee that anybody … is going to finish."
Arias toyed with the idea of waiting a year before applying; he thought maybe the political climate would cool by then.
"But we decided it was now or never," Arias said of himself and the other Dreamers in his graduating class.
He recently applied to renew his DACA status, he said, and is trying to simply focus on "the craft of learning medicine," not the turmoil surrounding the immigration debate. If DACA were eliminated, he and other recipients would lose their status at different times, whenever their two-year terms ended.
Before DACA, people without permission to live and work in the U.S. couldn't get medical residencies because they didn't have work authorization, Nakae explained.
Raquel Rodriguez, 30, was one of the few undocumented students who started medical school before DACA was created.
Rodriguez, who was born in Mexico City and raised in San Diego, is a second-year family medicine resident in Southern California. She also declined to disclose the name of her residency program.
Rodriguez received her undergraduate degree from Harvard University in 2009. But because she had neither immigration papers nor DACA, her academic counselor discouraged her from applying to medical school, explaining that she wouldn't be able to secure a residency spot, she said.
She applied anyway, and in 2011 she started medical school at UCLA.
"I applied, but didn't think I'd get in, and then I did and I had no idea how I was going to pay for it," she recalled.
Medical school is expensive — the median in-state tuition at a public medical school was about $37,000 for the 2017-18 academic year, according to the Association of American Medical Colleges.
Rodriguez's friends from Harvard helped her pay for her first year. Then in June 2012, DACA paved the way for other financial opportunities. By patching together scholarships and loans, Rodriguez got herself through her remaining years of medical school.
She will finish her medical residency training next year. She also has a master's degree in public policy and hopes to find a job that combines both disciplines. She's still not sure what that will look like, but she knows she wants to give back to low-income communities.
So does Arias. Members of his family didn't have health insurance because of their legal status, so he'd like to serve populations who also struggle with limited access to coverage and care, he said.
"I see the role I can play in my community," he said. "I don't want that to be stripped away from me."
For many of the island's most vulnerable residents, the 2017 storm turned a healthcare access challenge into a full-blown medical crisis that cannot be easily reversed.
To reach the Martinez home in Puerto Rico’s central mountains, social worker Eileen Calderon steers around piles of dirt, treacherous potholes and power company trucks that block the road. Finally, she pulls up to a sagging, cement home, its roof done in by Hurricane Maria. Laundry hangs under a tarp, and a cat is tied to a leash outside the door.
Calderon, who is based in San Juan, and works for VarMed, a company that handles complex medical cases in Puerto Rico, has brought two colleagues — a nurse, Anamelia Velazquez, and a primary care physician, Dr. Carla Rossotti — to check in on Osvaldo Martinez and his son, Osvaldo Daniel Martinez.
Inside a darkened bedroom, the elder Martinez, a 67-year-old former star pitcher in the local baseball league, spoons rice and sausage into his son’s mouth. The younger Martinez lies in a hospital bed, his arms and fingers spasm and his eyes loll around in his head. He’s 37, born in Chicago, a former security guard.
Three years ago, after he and his father moved back to Puerto Rico from Illinois, the younger Martinez started showing early signs of multiple sclerosis. During the past year, his world became this room, then this bed.
His father points to the ceiling — leaking from the morning’s rain and covered in mold.
“All of this leaking that you can see came out because of the hurricane,” he said.
The power came back on in his house about a month ago, and the family has running water, so he is able to keep his son clean. The father carries a plastic basin into the bathroom and draws the water. Then, as he does a few times each day, he returns to the bedroom to bathe his adult son and gently change his diaper.
But Rossotti, whose company, VarMed, has been paid by the Puerto Rican government to help take care of the junior Martinez, said the younger man can’t yet get an appointment to see a neurologist to confirm his multiple sclerosis and start treatment. There is a chronic shortage of neurologists on the island, and those who remained after the storm have few slots in their schedulesfor Medicaid patients.
Calderon, the social worker, said she has been trying for a year to get an appointment for Martinez, but receptionist after receptionist tells her the neurologists they work for are taking no new patients. “We have a patient who was stable a year ago, and now he’s bedridden,” Rossotti said. “He hasn’t been able to get that neurologist evaluation.”
People here in Puerto Rico talk about life “before Maria” and life after. Accessing medical care here has always been a challenge, given the island’s chronic shortage of physicians and its unusual system for Medicaid — known as a block grant. The government provides a certain amount of money for each citizen in the program, no matter how great the needs are for care.
And for many of the island’s most vulnerable residents, like the Martinez family, the 2017 storm turned a challenge into a full-blown medical crisis that cannot be easily reversed. Since the turn of the century, a number of effective medicines that treat MS have come on the market, transforming the lives of people with the progressive disease, which can damage nerve conduction to anywhere in the body — the eye, the brain, the bladder, the legs. Treatment both helps slow progression and resolves symptoms. But it is less effective once damage to the nervous system is done.
The island’s financial crisis has sent doctors fleeing to the States during the past decade; Hurricane Maria added further fuel to that exodus. There is no exact accounting yet of just how many physicians have left the island, but from 2006 to 2016, the number of doctors dropped from 14,000 to 9,000, according to the Puerto Rico College of Physicians and Surgeons.
Nearly half of Puerto Ricans on the island rely on Medicaid — compared with around 20 percent of the population in the continental U.S. The territory’s government has long struggled to cover the costs of health care.
Currently, Molina Healthcare, a California-based company that provides insurance coverage to low-income people on Medicaid in Puerto Rico and elsewhere in the U.S., is ostensibly responsible for guaranteeing access to needed doctors.
A spokeswoman for Molina, Laura Murray, said the company cannot comment on the Martinez case, or that of any individual patient, because of privacy laws. But in a written statement, the company representative reported that it contracts with 41 neurologists in Puerto Rico’s eastern and southwestern regions, and meets “the network adequacy requirements in our contract.”
“However,” the statement continued, “we recognize that there is an island-wide shortage of physicians — particularly specialists — and we are proposing suggestions to [the Puerto Rican government] on how we could work together to remediate this.”
The island government recently announced that it will overhaul how Medicaid contracts are awarded.
For now, the younger Martinez languishes — each day and night no different than the next, as the disease lays siege to his central nervous system, disrupting the vital connections between brain and body.
Without a confirmed diagnosis, he can’t get certain public disability benefits. And he isn’t getting medication for his condition or his pain; the agency Rossotti works for can only advocate for patients, not treat them.
The outward perseverance of father and son belies the true terror of their confinement. As the elder Martinez describes his son’s decline, tears come to his eyes; his son, who can understand everything, rolls on his side and begins to weep.
“I have to do all that needs to be done for him,” Martinez said. But he is not in good health himself, with severe arthritis and a painful bulge in his abdomen. During the months they went without power, he said, the hospital bed didn’t go up and down. He showed a photo of his arm — black-and-blue and swollen — from pressing against the metal bars of the bed as he leaned down to tend to his son.
But it’s his son’s withering away that pains him most.
“If something would happen to me,” the father said, clasping his hands together in prayer — “I don’t know.”