Tag Archives: health policy

On-going Zika Crisis in Brazil: Lessons for the U.S.

A report released this week by the Human Rights Watch documents the ongoing tragedy of Zika in Brazil. The Brazilian government has declared an end to the national public health emergency. Yet pregnant women are still becoming infected with the Zika virus, babies are coming into the world carrying the effects of Zika, and families will continue to care for their Zika-affected children for years to come. More broadly, the social, economic and environmental conditions that gave rise to and then exacerbated the Zika outbreak in Brazil have not changed. Sadly, many of these conditions are present in the United States as well. And while Zika has not wrecked havoc in the continental US (Puerto Rico has experienced significant Zika outbreaks), these same conditions are fertile ground for a multitude of public health disasters.

Environment and Infrastructure

I spoke with Margaret Wurth, a children’s rights researcher who spent a year interviewing nearly fifty women and girls who were pregnant or gave birth in two of the states most affected by Zika. She learned that Brazilian authorities warned women to spray their homes with insect repellant and to cover open water jars, “but there is only so much as individual can do.” In communities with erratic water supplies, people have no choice other than to fill tanks with drinking water. But these same tanks can quickly become breeding grounds for mosquitoes. The Human Rights Watch report also describes, “Untreated sewage flowing into open, uncovered channels, storm drains, roads, or waterways.”

Wurth recalls meeting a pregnant sixteen year old who did everything she could to protect herself and her fetus. She wore long sleeves, doused herself and her home with insect repellent and covered water jars in and near her house. She did not know, however, that Zika can be transmitted sexually. And she could not, of course, single-handedly clean up the standing water and sewage in her favela.

In the United States most communities have covered sewage disposal systems and household running water. Yet the American Society of Civil Engineers graded the country with a D+ in wastewater management in 2017. Their assessment is that more than $105 billion is needed for wastewater funding. With Congress stalled and no real plan for investing in infrastructure, this kind of funding seems unlikely. And while some states have reasonably good water and sewage systems, in other states – most notably Alaska and Mississippi – significant numbers of households lack both.

Reproductive Health and Rights

One in five of Brazilian mothers raising children with Zika syndrome are under the age of twenty. These young women were unlikely to have access to birth control. Given Brazil’s prohibition on abortion, women may turn to dangerous “backstreet” abortions. A young woman who especially touched Wurth’s heart underwent a clandestine abortion at the age of thirteen; she had become pregnant as a consequence of rape. Wurth met women who had used caustic acid to induce abortion. Facing the terror and the stigma of bearing a child with Zika-syndrome, these women risked their lives. Not all survived.

In the United States access to contraception and abortion are increasingly under attack. The Republican health care bills would further reduce access to reproductive health care through defunding Planned Parenthood and removing birth control from the list of basic services insurance must cover.

In Brazil, government efforts to educate about Zika are disproportionately aimed at women, implicitly absolving men of the responsibility to prevent transmission or to help raise children living with Zika-syndrome. “Mothers are overwhelmingly the primary carers for kids with Zika syndrome. It’s very challenging. They can’t continue working or going to school. They often need to travel long distances and fight with agencies and officials to get the services they are entitled to,” according to Wurth.

In the United States family planning is similarly delegated to women, especially in communities that do not allow comprehensive sex education in schools. An abstinence-only curriculum does not prepare young men to be responsible sexual partners. And, like in Brazil, American mothers – especially low income mothers – face suspicion when they request government services. Republican demands that food stamp and Medicaid recipients work at paying jobs will hit hard at mothers of disabled children.

The Way Forward

There are measures that should be taken in the short and long terms to prevent future outbreaks of diseases like Zika, and to support those who are most affected. Developing and maintaining safe water distribution and sewage systems in all communities is crucial. Women and girls need access to the full range of medical services, including contraception and abortion. Men must be educated to shoulder their share of the responsibility for sexual safety, family planning and child rearing. And families and communities must be able to rely on ongoing support to care for ill and disabled individuals.

It’s unclear if the Brazilian government’s declaring the Zika crisis over was naively optimistic or blatantly political. In any case, it is eerily reminiscent of the declaration that “America has the best health care system in the world” when all data show health care in the US ranking last among developed nations. There are important lessons for the US both in the underlying causes of the Zika disaster in Brazil and in the Brazilian government’s response. We ignore them at our own peril.

Uninsured in Texas, Then and Now

In previous posts, I shared stories of Americans who had been uninsured when I first met them a decade ago and who, in the wake of the ACA, now are insured. These stories were inspiring, encouraging and – in a few cases – disappointing in that health insurance alone cannot make up for a lifetime of sub-par living conditions, harmful working conditions, and the cumulative ill effects of inadequate health care.

As the president-elect and Republican congressional leaders are reiterating promises to repeal the Affordable Care Act, it’s crucial to remember what it’s like for Americans to try to scrape by without dependable access to health care. The experiences of people living in states that elected NOT to expand Medicaid eligibility under the ACA serve as a wake-up call for what things were like during the bad-old-days. In this article published in Health Affairs I share the story of Texas parents valiantly struggling to care for a child with disabilities, even while their own health deteriorates due to lack of medical attention.

I ended that article with a section I called “Playing Prophet.”

For the time being, at least, it seems unlikely that the Texas health care landscape will change. The barrage of anti-Obamacare radio, television, and billboard ads I heard and saw when I visited Texas during my research represent a well-financed campaign that, unfortunately, has convinced even those people who would benefit the most from the ACA.

Luis and Daniela’s situation probably won’t change much, either. Luis will get older, still working long shifts driving trucks and loading and unloading them. Daniela will age, too, still lifting Alexa. Alexa will never be able to care for herself. And her brother, now a teenager, will age out of CHIP and either become one of the lucky few in the Rio Grande Valley who finds a job that offers insurance or hope and pray that he remains healthy enough not to need much medical care. It’s likely that the next time I visit them, either Luis or Daniela, or possibly both of them, will have become too disabled to continue working and finally will have health care coverage through Disability—which will come at the price of a substantial drop in family income as well as a blow to their self-esteem as providers. It’s hardly an ideal solution for their family or for Americans overall.

Post-election, this prophecy actually feels overly optimistic. In light of Republican promises to privatize Medicare — as well as the president-elect’s mocking impromptu performance and history of unethical practices regarding people with disabilities — I fear that the family’s worry that Daniela will end up in a horrid, underfunded institutional will happen sooner rather than later.

Uninsured in Idaho: Policy Brief

This brief is offered as a contribution to current deliberations regarding Medicaid expansion and healthcare reform in the Idaho state legislature. Idaho, like many other “blue” states, did not accept the Affordable Care Act’s Medicaid expansion. As a consequence, Medicaid in Idaho, at this time, is only available to children, pregnant women, parents of children under the age of 19, disabled people and the elderly. Even within those categories not many meet the Idaho Medicaid criteria: A family of 4 must earn less than $650 / month to qualify.

Research Findings

In 2003 I conducted in-depth interviews with uninsured individuals and families in northern Idaho, south-central Illinois, Texas, Mississippi and Massachusetts. All 37 Idahoans – at the time – were in the work force, though many were struggling to maintain a level of health sufficient to allow them to continue working and caring for their families. As I wrote in Uninsured in America: Life and Death in the Land of Opportunity (University of California Press, 2015), I was struck by the “rugged Idahoans” who shared with me stories of swallowing handfuls of Ibuprofen each day in order to manage pain, using a pocketknife to shave off bone spurs from their feet, turning to friends who worked as aides at nursing homes for help bandaging wounds, and confronting medical bills of $100,000 or more in the wake of an accident or health crisis.

In 2015 I returned to Idaho and the other four states in which I had carried out research in 2003.

  • In Idaho I looked for 37 people and was able to re-interview 20 of the 37.
  • Five of the 37 were dead: all five had passed away prematurely (in their 40s, 50s or early 60s).

One of the dead, who passed away at the age of 58, had worked in the mines his entire life. He left behind a wife and children.

  • Five are now recipients of SSI or SSDI by virtue of having become too disabled to continue working.

Jane used to work at three jobs: cleaning houses, doing laundry in a nursing home, and waitressing at a café. “Eventually I cut back to just the café job because it was my social life,” she explained, “but finally I couldn’t do it anymore. I even kept working through double pneumonia because I had to pay my bills, but eventually I had to stop because of my legs – you see my feet and ankles hurt and then turned black.” When she was finally diagnosed with diabetes at a free clinic she was told that she most likely already had diabetes for seven to ten years, but it had never been diagnosed or controlled. The staff at the free clinic would give her free samples of her medication whenever they had it available, but that was not a consistent source. At age 57 Jane was granted Disability (SSDI), but then had to wait two more years to become eligible for Medicare. By 2015 was able to access care through Medicare and Medicaid, but it was too late. She now is housebound.

  • Five now receive insurance through their employers and none of the five are able to cover their dependents through their employers. According to the Idaho Department of Labor, approximately 95% of Idaho businesses employ less than 50 workers, exempting the businesses from the ACA mandate to provide health insurance.

Marla and Peter, parents of three young children, were uninsured when I met them in 2003 and remained uninsured until a year or so ago. This was challenging because Peter has a blood disorder, ulcerative colitis and glaucoma. Throughout his adult life he has worked steadily for a company that he likes and likes him, but does not provide health insurance. When their kids reached school age Marla took an office job, but it did not provide health insurance. To take care of her family’s health needs, Marla drove them to doctors all over the northern part of the state – sometimes putting hundreds of miles on the car. At each office she would accumulate a manageable bill that they tried to pay off over time. Typically, the doctor would not see them again until they fully paid the bill. Knowing they needed healthcare coverage, Marla began to work for another small business owner who agreed to pay half of their monthly health insurance premium. But the remaining half was so high that after it was deducted from her salary she ended up taking home about $5 / hour. In 2015 she moved to a job with somewhat better insurance. Her premium now is $250 / month, but the deductible is $3000 per person and there are hefty co-pays and co-insurance.

Al, a farmer in his early 60s, was embarrassed to admit to liking “Obamacare.” But he certainly has benefitted from expanded healthcare access. Diagnosed with lung cancer a number of years ago, he had not been able to obtain health insurance before the ACA because of his pre-existing condition. During those years, hospital bills were as high as $300,000 annually, leaving him in horrendous debt. Now he pays $12 / month for insurance through the Exchange and his doctor is satisfied that “there are no new tumors.”

  • Four had moved out of state, primarily in order to access healthcare in Washington or other states that have expanded Medicaid under the ACA. No one in Idaho was receiving Medicaid in 2015.

Chris and Brittany, a vivacious couple in their thirties, moved from Idaho to Washington several years ago after Chris injured his leg on a construction job and the workers compensation ran out before the surgeries he needed were completed. While Chris was out of work Brittany took a job at a restaurant in order to tide them over. With her salary they earned too much for Chris to qualify for Medicaid and get his leg fixed. But without that salary they couldn’t survive. Today, they both are healthy and productively employed in the state of Washington, where they are raising their children and waiting for the day when it will be possible for them to return home to Idaho.

 Policy Recommendations

  • Senate Bill No. 1204, an act that proposes expanding Medicaid eligibility to persons under age 65 whose modified adjusted gross income is one hundred thirty-three percent (133%) of the federal poverty level or below, is an excellent first step towards allowing all Idahoans access to appropriate healthcare services and thus the ability to maintain better health.
    • Those with incomes below 133% of the federal poverty level cannot afford to pay for appropriate medical services. As a consequence, their health deteriorates and/or they amass medical bills that eventually are passed on to the counties or the state.
    • Idaho hospitals and clinics, for the most part, already accept Medicaid payments. Thus, the infrastructure is in place and implementation of this expansion should not involve additional costs or bureaucratic complications.
  • The proposed Primary Care Access Program (PCAP) is unlikely to substantially improve access to healthcare for Idaho’s low income residents.
    • While primary care is the core of any healthcare system, the reality of today’s complex medical world is that primary care visits alone are rarely sufficient for diagnosing or treating serious illness. For primary care providers it is frustrating not to have the capacity to send patients for tests, procedures or specialist care. Patients will find themselves in the frightening position of being told by a primary care provider that they need certain treatments but that the primary care program does not cover them.
    • There is no evidence that access to primary care alone, without parallel access to other medical services, improves the health of populations.
    • According to the published description, “The program requires payment for services on a sliding scale fee, which encourages greater personal responsibility for the patient’s own health.” Given that this program is aimed at people with very low incomes, it is more likely that fees will function as deterrents to care rather than as encouragement of personal responsibility.
    • In my research in Idaho I have never spoken with a single individual who can afford healthcare but irresponsibly chooses not to seek it. The most common reasons for not seeking care are: lack of insurance, deductibles that are too high to meet, lack of transportation to healthcare centers, inability to take off time from work during clinic hours.
    • By limiting access to healthcare to specific health centers, this proposal fails to address the needs of many Idahoans who do not live near any of the specified health centers.

 

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Acknowledgments: In addition to the uninsured and formerly uninsured individuals whom I interviewed, I spoke with Terri Sterling, ICAN; Charlotte Ash, Snake River Community Clinic; Ken Whitney, Jr., Mayor of Troy; Dr. Richard Thurston, St Maries Volunteer Clinic; Donald Duffy, Panhandle Health District; Moriah Nelson, Idaho Primary Care Association; Pam McBride, Clearwater Valley Hospital, Orofino; Ashley Piaskowski, Heritage Health, Coeur d’Alene; Dr. Ted Epperly, Idaho Healthcare Coalition and Family Medicine Residency of Idaho; Stephen Weeg, Board Chair, Idaho Health Insurance Exchange. I thank all of these people for taking the time to share their expertise with me. All opinions and errors are my own.

 

Contact Information: Susan Sered, PhD; Department of Sociology, Suffolk University; 73 Tremont Street, Boston MA 02108

Email: ssered@suffolk.edu

For more on this research see Health is Where the Home Is   Health Insurance Roulette: The House Always Wins   The State(s) of the Affordable Care Act