At the heart of the matter

A Heller professor and student partner with Rwandan government and Boston-based nonprofit to provide cardiac care

Runaway train

To the average American child, strep throat is a common inconvenience. A throat swab, some chicken soup, a round of penicillin and then back to school—there's little cause for concern.

And yet in the impoverished communities of many developing nations, strep throat has a far more sinister story. Without antibiotics, strep throat can turn into a runaway train, steadily worsening until it morphs into rheumatic heart disease, a chronic inflammatory illness. Children that develop rheumatic heart disease become weak, short of breath, have chronic chest pain and fatigue. Eventually they lack the strength to walk even short distances on flat terrain, and their hearts are so damaged by the disease that a heart valve replacement is their only recourse.

To say that treatment options for rheumatic heart disease in Rwanda are limited is an understatement. These young people require open-heart surgery in a country that doesn't have a single cardiac surgeon, and just four cardiologists. The wealthy few might pay out-of-pocket for a surgery in South Africa or India, while the rest are placed on a waiting list for a pro bono surgery from an international humanitarian organization.

Team Heart: A group of surgeons with their finger in the dam

One such humanitarian organization is Team Heart, a group of cardiologists and cardiac surgeons from New England based Hospitals. Since 2008, they have performed 16 valve replacement surgeries every year on rheumatic heart disease patients in Rwanda. They have saved over 100 lives, but recognize that these surgeries serve an acute need at the last possible moment of intervention—and it's an expensive way to treat people.

"From the very start we felt a strong moral obligation to do these surgeries," said Ceeya Patton-Bolman, co-founder of Team Heart, "but we also realized that what we were doing was just a Band-Aid. With some money, you could identify and treat most rheumatic heart fever patients long before surgery is required. And for those who do need cardiac care, Rwanda sorely needs an improved facility and trained workers in-country."

Noella Bigirimana: Team Heart intern and Heller MS student

Noella Bigirimana, MS'15

Heller student Noella Bigirimana, MS'15, grew up in the Rwandan health system. With a doctor for a father and a nurse for a mother, she spent her childhood in and around the hospitals of Kigali. After receiving her undergraduate degree at Cornell, she moved to Boston and pursued an internship at Team Heart, where she eventually became their project manager.

In 2013, Bigirimana went back to Rwanda for a two-week visit—but this time, on a Team Heart surgical trip. "The whole first week was patient screening for patients at the top of the waitlist. The waiting room was packed—completely packed, for 12 straight hours every day, no matter how many patients we saw. It was just so full," she said, "and these were the people who were lucky enough to get diagnosed, lucky enough to get placed on the waiting list, and lucky enough to physically get to the health center. Some of them slept in the hospital overnight, just waiting and hoping."

"It's one thing to look at the numbers, but it's another thing to look at their faces," she continues. "I realized that, despite tremendous progress, the Rwandan system isn't ready for these patients. Something has to be done." When she returned to Boston after that trip, Bigirimana applied to the MS program in International Health Policy and Management at Heller.

The 1994 genocide in Rwanda devastated the country, resulting in the deaths of about one million people in 100 days. Unfortunately the healthcare system was one of the most damaged. Many nurses and doctors—predominantly identified as Tutsi—were killed early on in the conflict. Hospitals and medical centers were used as barracks for soldiers, severely damaging the facilities.

Over the past two decades, Rwanda has rebuilt its healthcare system. It's improving facilities, strengthening primary care and re-opening the medical school in Butare. After years of providing valve replacement surgeries, Team Heart started to talk with Rwandan healthcare leaders about building an improved cardiac facility, but was met with reluctance and understandable concern about cost and sustainability.

A systems-based approach

In April 2014, the Heller School invited Rwandan President Paul Kagame to speak at Brandeis. Noella Bigirimana, Ceeya Patton-Bolman and her husband, a surgeon, attended the event on behalf of Team Heart, where Patton-Bolman happened to sit next to professor Diana Bowser, director of Heller's MS program.

Ceeya Patton-Bolman with three of her patients

"Ceeya started telling me about Team Heart and rheumatic heart disease, the surgeries they do and all the ways they wished they could improve the Rwandan health system," said Bowser. "The wheels started turning, and as a health economist, my first thought was 'that project's not sustainable the way it is.'"

"Professor Bowser started telling me about her work, and I thought 'oh my gosh, this is someone who can make a huge difference for us,'" said Patton-Bolman. Shortly thereafter, Team Heart brought Bowser on board to help them partner with the Rwandan Ministry of Health. Bowser is charged with conducting a health system assessment and finding an affordable way to add cardiovascular care to the country's health system.

With research assistance from Bigirimana, Bowser has begun to assess the healthcare system for expansion, and the news is good. "Rwanda is ready for this," she explained. "You can't say the same for all countries in sub-Saharan Africa, but Rwanda has a base level of technology and has developed a community-based health insurance that covers about 85% of its population. Although right now it only covers basic primary care, this gives us a solid foundation on which to grow."

People living in underdeveloped nations have low life expectancies, and many die of infectious diseases like malaria. As a country's health systems improve, the average lifespan of its citizens grows. However, as life expectancies increase, so does the prevalence of late-in-life illnesses, like cancer and cardiovascular diseases. Treating these "diseases of affluence" typically requires an overhaul of the healthcare system: adding new facilities, expanding payment plans and training a new healthcare workforce.

This is Rwanda's current situation—its primary healthcare system has improved drastically and it now faces a growing demand for cardiovascular care and other non-communicable diseases including diabetes, hypertension and cancers. "One of the higher-level officials we're working with has been enthusiastic about this project because he himself is paying out-of-pocket to fly out of Rwanda for heart disease treatment," said Bowser. "He has the money to fly out and get that care, but a growing number of Rwandans need these services, and most of them can't pay."

An opportunity for equity

In Rwanda, rheumatic heart disease is a disease of the rural poor. Isolated from urban amenities—including hospitals—and unable to walk modest distances or attend school or work, these young adults suffer both physically as well as psychologically and socially. Since the disease is poorly understood and often undiagnosed, many assume they have HIV, which bears a heavy stigma in the region.

Team Heart continues to provide 16 surgeries per year, and is currently planning to build a state-of-the-art cardiac facility in Kigali where Rwandans will receive in-country treatment. "But we can't just build a hospital and leave it there, like an island," said Bigirimana. "The people we're targeting most likely live in rural regions and are most likely poor—they won't have access to that hospital if there's no way to get there and no way to pay for services. The trick is to integrate it into the system."

Diana Bowser, Heller MS Program Director

The challenge now facing Bowser and the Rwandan Ministry of Health is to figure out how to pay for expanded cardiovascular services. "That's where it gets innovative," said Bowser. "We need to find a way to finance this plan. Other countries have covered services for cancer care and cardiovascular care in creative ways, so we're surveying case studies to see what's worked."

"The purpose of this project is not to expand cardiac services only to those who can pay, but to the entire Rwandan population," Bowser stressed. Expanding the Rwandan health system to include preventive cardiac care will reduce the rate of rheumatic heart disease among the rural poor, and will allow more children to be treated early—before they need a valve replacement.

Patton-Bolman and Bowser continue to foster a close relationship between Team Heart and the Rwandan Ministry of Health, which is committed to explicitly addressing health equity concerns. "That's huge," said Bigirimana. "We're able to have those tough conversations about funding and strategy, while openly agreeing that we're targeting the poorest of the poor in our country." She added that there is urgency to make these improvements now. The burden is real, and it's growing.

Pioneering HIV prevention strategies for transgender women

Dual degree candidate Emilia Dunham works towards empowering young transgender women
to stop the spread of HIV.

When dual degree candidate Emilia Dunham isn't juggling the demands of the Heller School's MPP and MBA programs, she's managing a professional career at Fenway Health, where she works as the project manager of an NIH-funded research study. With her colleagues at Fenway, Dunham tests whether a group intervention called LifeSkills can empower young transgender women to stop the spread of HIV.

Emilia Dunham (first row, left) and the LifeSkills team

As a randomized-control trial, some of the trans women who enroll in LifeSkills participate in six interactive group sessions led by transgender female facilitators. The skills taught in these sessions help participants identify and avoid risky sexual behaviors. Four months, eight months and 12 months after completing the program, LifeSkills researchers collect follow-up data on study participants to see whether the program had an impact on their health and behaviors.

More than 25 percent of trans women have HIV—and yet, unlike other populations, the Center for Disease Control (CDC) has no scientifically proven HIV prevention program for the transgender community. Compared to cisgender (non-transgender) populations, there is very little data on transgender health, and what is known is discouraging. Transgender youth are often bullied, placing them at risk for violence and making them more likely to drop out of school. Many are unsupported or rejected by their families, resulting in high levels of homelessness, abuse and trauma.

"Often, trans youth are just trying to survive," says Dunham. "Due to discrimination many struggle finding jobs, or are homeless, and so some of them get involved in sex work to pay rent or to pay for transition-related medical care." All of these factors place trans women at increased risk for HIV and other sexually transmitted diseases.

Now in its final year, LifeSkills is wrapping up initial data collection and intends to publish its findings in 2016. Dunham is hopeful that the data will demonstrate the program's effectiveness. In addition to collecting participant data relevant to the LifeSkills program, Dunham and her colleagues are also collecting a wealth of information on other topics, such as housing, relationships, employment, and standard health measures. In the nascent field of transgender health, this database alone is a contribution to the scientific community.

Formal results from the program have yet to be released. However one notable finding, Dunham says, is "the incidence of sexually transmitted diseases and HIV in the trans community Boston—while still higher than the cisgender community—is much lower than in, say, Chicago or Atlanta. This shows that Boston's prevention efforts have been pretty successful. Of course, there's still a lot of issues. We see a lot of mental health challenges with study participants—depression, anxiety, experiences with trauma—some are diagnosed, but many are undiagnosed."

When it began four years ago, Project LifeSkills was the largest NIH-funded study on transgender health in the history of the United States. "That's great," says Dunham, "but when you really think about it, this is just one of many studies that needs to be done. LifeSkills is a really great idea, but it's just one piece of a solution to a much larger need for the transgender community."

Learn more about Emilia Dunham's work on transgender health equity:

• In July 2014, Dunham and her colleagues at Fenway also studied the effects of discrimination on trans health. She co-authored a Massachusetts state needs assessment which showed that two-thirds of transgender adults reported having experienced discrimination, making them twice as likely to report adverse health outcomes.
• In August 2014, Dunham penned an op-ed featuring these findings, which was published on WGBH.
• In July 2015, Dunham co-authored a paper that focuses on the persistent health inequities that result from transgender discrimination in Massachusetts healthcare settings.

Patients with substance use disorder aren't treated equally

The Institute for Behavioral Health examines disparities in quality of care

A team of researchers at the Institute of Behavioral Health has published a new study that examines the inequitable healthcare treatment that certain racial/ethnic groups receive for substance use disorders. "Performance measures and racial/ethnic disparities in the treatment of substance use disorders," appears in the Journal of Studies on Alcohol and Drugs.

Lead author Andrea Acevedo met with Heller Communications to describe the study's key findings and contributions to the field of behavioral health research. Excerpted below are a few quotations—for the full Q&A, click here.

On the study's key findings…

Andrea Acevedo, lead author

Performance Measures and Racial/Ethnic Disparities in the Treatment of Substance Use Disorders

"We assessed disparities in 'treatment engagement,' a marker of quality that focuses on the quantity and timeliness of services received early in treatment. We found that Black and American Indian clients are less likely than White clients to engage, or receive what is considered a minimal level of outpatient treatment services for substance use disorders. We tested whether socioeconomic differences may have driven those disparities, but that was not the case."

On the importance of this issue…

"According to the Centers for Disease Control, Blacks and Latinos make up over 70 percent of the estimated new HIV infections that are due to injection drug use. Also, the Black arrest rate for drug possession is approximately three times that of Whites, even though the Substance Abuse and Mental Health Administration reports that the estimated rate of illegal drug use for Blacks is only slightly higher than for Whites."

On the connection between inequities in substance use disorder treatment and the criminal justice system…

"Overall, there is a strong connection between substance use disorders and the criminal justice system. Based on estimates from the Bureau of Justice Statistics, an estimated 13 percent of all arrests reported are for drug-related offenses, a third of state and a quarter of federal inmates report they committed their offenses under the influence of drugs, and almost 20 percent of state and federal prisoners report they were motivated to commit crimes to obtain money for drugs."

On fixing these disparities…

"If disparities are detected, the causes of the disparities need to be understood. If there are inequities in care within a treatment facility, are all groups feeling welcome in the facility? Are some clients facing language barriers, and are treatment programs staffed to address these needs? Could there be provider bias? Or are there systemic inequities, such as a dearth of high quality treatment providers available in the neighborhoods where minorities live? The strategy to reduce or even eliminate disparities will depend on their source."

Read the full Q&A →

Improving primary care for adults with autism

Physician training and insurance reimbursements preclude equitable treatment

Autism spectrum disorder (ASD) affects one in 68 children in the United States. That makes it the fastest growing subgroup of youth with disabilities in the country. As millions of young adults with ASD age out of pediatric care and move into adult healthcare, physicians struggle to meet the unique needs of these young people and their families.

A recent study led by Marji Erickson Warfield, PhD '91, director of the Nathan and Toby Starr Center on Intellectual and Developmental Disabilities, shows that even physicians who regularly provide care to adults with ASD feel that they lack the training and resources to provide high-quality healthcare.

Marji Erickson Warfield (left), Morgan Crossman (right)

Marji Erickson Warfield

Morgan Crossman

The issues range from education to financial barriers, says Erickson Warfield. Her coauthor Morgan Crossman, PhD'15, conducted in-depth interviews with ten physicians. "These doctors specialize in working with patients with ASD, and even they were quick to say that there are a lot of challenges," says Crossman. "Little attention is given to educating medical school students on how to treat patients with disabilities, and the physicians I interviewed knew it." She says several doctors mentioned needing to go out of their way to find proper training on these topics.

Physicians are supposed to see patients in 15-minute blocks, which often isn't enough time to properly attend to an adult patient with ASD. Insurance companies rarely reimburse physicians for anything that happens outside of those 15 minutes, such as coordinating care with other physicians or therapists, or connecting healthcare to employment, transportation or education needs. "This means that physicians have to provide this 'extra' care on their own time, for which they're not reimbursed, which is both a burden and a financial disincentive to giving these patients the care they need," says Erickson Warfield.

All of this adds up to a decreased likelihood that adults with ASD receive even basic medical checkups at the same frequency and quality as patients who don't have disabilities. Given the rising rates of autism, if the medical field doesn't take this major need into consideration, that does a disservice to the profession as well as to these patients. "If nothing changes, this problem will only get worse in the next ten to twenty years," says Crossman.

"These findings are applicable to other disabilities as well—not just autism," says Erickson Warfield. Improving insurance reimbursement formulas as well as medical and nursing school training, can help to ease the transition to adult healthcare for millions of young people with ASD across the nation.

Four decades of health equity work

La Verne Reid, PhD'99, reflects on Heller, her public health career and the road ahead

La Verne Reid, PhD'99, is a professor in the College of Behavioral and Social Sciences at North Carolina Central University. In addition to teaching and mentoring students, Reid partners with North Carolina state health agencies to design training programs to increase the cultural competency of healthcare providers working with HIV patients. She spoke with Heller communications about her decades-long career in public health and health equity.

How did you get started in your public health career?

I started working in the early 1970s while I was still in grad school. I was the first person of color hired by a county health department in the state of North Carolina. I was the family planning health educator, or "population dynamics specialist."

Back in those days, women who wanted a pregnancy test had to bring their urine specimen to the Department of Health. If that woman was under age 18 and had a positive pregnancy test, I was the person who counseled them. Of the girls I met with, I found that those who chose to keep their babies were going to have the more difficult task. So we designed a program for parenting adolescents to help them navigate the systems they'd need to work with.

How has this differed from the health equity work you've done in major cities, such as Boston?

When I worked in Boston there was a public concern about disparities in infant mortality. The mayor allocated money to address those disparities, but you can't actually address problems of that magnitude in a year. What you can do is move the needle on the way people think about that problem. Why is it that middle-class black women have higher infant mortality rates than their white counterparts? We worked to address questions like that and change public perception.

What aspects of health equity and health disparities do you believe are most pressing today, and what strategies can we use to solve them?

When we talk about health disparities today we're talking about poverty, access to health care, educational inequalities and the prison pipeline. These issues are interconnected. For example, everyone knows there are disproportionately large numbers of African American men in prison, but not everyone knows that many of them become HIV positive while in prison. The prison health system is inadequate—are they testing inmates before they arrive? Are they then sending them back to communities with a communicable disease they don't know they have? That's a health inequity based on access to care.

I think the Affordable Care Act is the first real program to address health disparities on a national level. Not all health disparities are related to access to care, but access makes a difference. The fact that more people can go to the doctor without astronomical copayments is important, especially given the fact that we don't currently have a livable minimum wage.

When we think of our country's desire to improve the national economy and our intent to improve the health status of the nation, they're often seen as incongruent goals. We need to find ways to reduce costs for those footing the bill, while increasing services for those who are at risk. That's where the rubber sometimes doesn't meet the road.

How has your PhD from Heller shaped the work that you do?

I talk about my experience at the Heller School a lot with my students because we are very interested in health inequities. Heller exposed me to the language that policymakers use, and it's totally different from that of health inequality. I learned to speak that language and examine those differences.

After receiving my PhD from Heller I worked with the North Carolina legislature, helping them understand how using data could inform their decision-making. Heller gave me access to that world. I learned the way policy is decided upon, and I understand that now. Heller opens doors.