For 15 years, Madelyn Rhenisch struggled with an illness that drained her of all physical and mental vitality, destroyed the successful career she had worked hard to build, and left her with no savings.
All because she couldn’t afford health insurance.
Then her luck changed. Now a 63-year-old resident of Boston, Rhenisch was the first person to enroll in the Massachusetts Commonwealth Care program, part of the pioneering 2006 health care reform, passed with bipartisan support, which provides subsidized coverage to lower-income residents who are uninsured. The program—dubbed “Romneycare,” after then-governor Mitt Romney—helped inspire the national 2010 Patient Protection and Affordable Care Act, known as Obamacare.
Ironically, Rhenisch had worked her entire life as an activist on behalf of farmworkers and lower-income people. “I came of age in the ’60s and wanted to change the world for the better. I never imagined I would be in a position where I myself would be desperately in need of support and advocacy.” She was pursuing a doctorate and MBA simultaneously and was juggling several human resource positions when she became sick.
The illness came on suddenly, in the winter of 1996. “It had snowed, so I shoveled a path to my car. When I came in, I was drenched with sweat and exhausted. I couldn’t get up for the rest of the day,” Rhenisch recalled. The overwhelming fatigue persisted, and new symptoms cropped up: severe muscle and joint pain, and a pervasive “brain fog.”
By 1998, she was forced to quit school, leave her jobs, deplete her retirement savings, and ultimately go into debt. Having lost school- and employer-based health insurance, she often had to choose between medicine and food.
In 2006, Health Care for All (HCFA)—Massachusetts’ leading consumer health advocacy organization—asked Rhenisch to become the debut enrollee in the state’s new health insurance program. There she met John McDonough—now director of the HSPH Center for Public Health Leadership—who at the time served as executive director of HCFA, where he played a key role in designing, passing, and implementing the state’s health- reform law. “He was so passionate about the issue,” said Rhenisch. “And he made me feel like a worthy person who had something important to contribute.”
In 2008, after a series of medical tests that she could finally afford, Rhenisch got a diagnosis: untreated Lyme disease. Three years of combination antibiotic treatment have made her nearly whole again.
But the memory of 15 years of physical and mental agony hasn’t faded. “Americans believe in bootstrapping your way to opportunity—that if you work hard and be good, everything will be fine,” Rhenish reflected. “But sometimes things happen, through no fault of your own. In a flash, you can slide over that line. As I learned firsthand, there’s a set of attitudes and judgments and hoops and rules and justifications that dehumanize people.”
With the new law in place, others may not have to endure the bureaucratic neglect that brought Rhenisch so much distress. “If I had had adequate health care to pursue a diagnosis, I am sure the infection would have been found much sooner,” she said. “I wouldn’t have lost the prime earning and living years of my life.”