You are one of Ocean State Stories distinguished freelance writers, specializing in health issues. More in a moment, but let’s start with your background. You have worked for major health institutions, including Boston Children’s Hospital and Brigham and Women’s. Tell us about that.
I started out writing press releases about research and clinical advances at Massachusetts General Hospital, then gradually took on other types of communications positions at other Boston hospitals. I’ve done feature writing, development writing (mainly major gift proposals), and planned communications campaigns. I also spent eight years working as an editor in the consumer health publishing division of Harvard Medical School. The Boston area is home to 25 hospitals and four medical schools, so there are a lot of jobs.
I feel lucky to have worked at some of the top institutions in the country. I learned a lot. But I don’t miss the commute! Freelancing enables me to stay in Rhode Island. And through my work at Ocean State Stories, I’m now learning more about the terrific care and research advances underway here.
What is Informed Medical Decisions Foundation and what did you do there?
The Informed Medical Decisions Foundation was a nonprofit organization dedicated to helping patients make better decisions about health care. (It has since merged with Healthwise, a nonprofit with a similar mission.) My job was to work with doctors to create decision aids to help patients understand the risks and benefits of medical tests and procedures, so that they could better discuss the options with health care providers.
Prostate cancer is an example of why that’s so important. Depending on his risk profile, a man with prostate cancer might have to choose between active surveillance, surgery, radiation therapy, hormone therapy, or other interventions. It’s dizzying. And doctors don’t always inform men about the chances of treatment side effects, such as erectile dysfunction or urinary incontinence. I worked on a prostate cancer decision aid designed to provide detailed information about risks and benefits of each treatment option, which men could review at home at their own pace, before they saw a doctor and made a treatment decision.
What attracted you to health issues in the first place?
I fell into medical writing. I avoided science courses in college. I spent my 20s moving up and down the East coast doing various jobs (a friend called me Anntrack). I landed in Providence in my 30s and started doing freelance stories for The Providence Journal, which is where I learned to write. I then briefly worked as a reporter at a small-town paper in Connecticut and hated it. Too many late nights, covering school board and town meetings!
But I wrote a few health stories, which I enjoyed. So one day I sent a resume to the public affairs office at several Boston hospitals. Only one person called me as a result: Martin Bander, the director of public affairs at Mass. General. He previously worked for years as a reporter at The Boston Herald, so I think he hired me mainly because I was also a reporter. And I discovered quickly that I loved writing about medicine. It’s constantly evolving, which makes it interesting.
And let’s face it, health is a reminder of what matters in life. At the risk of sounding corny, I’ve been inspired by the patients, doctors, and nurses I’ve interviewed over the years. They really are trying to make things better.
You also served as Board President of NAMI Rhode Island. Can you tell us about that?
I served on the board of NAMI Rhode Island because they saved my brother’s life. Literally. I felt obligated to give back in some way.
My brother John was diagnosed with schizophrenia in the early 1990s. Because our mental health system is so dysfunctional, he cycled in and out of Massachusetts and New Hampshire hospitals for three years before ending up on the streets. He was homeless for about a year and a half while my family struggled to get him help. By pure luck, he eventually ended up in Rhode Island, where most of my family lives.
By that time, I’d started attending NAMI Rhode Island support group meetings mainly for my own sanity. But the people I met through NAMI helped us get John into treatment and obtain housing. (Shout out to former NAMI RI executive director Bill Emmet, former RI Mental Health Advocate Reed Cosper, and the entire East Bay Mental Health Center staff.) John has had a few setbacks since then, but he’s managing his disease and is happy about his life. I’m proud of him.
Peer recovery, prenatal care and sickle cell anemia are among the topics you’ve explored for Ocean State Stories, and you bring diversity and inequity issues into your stories. Why is a focus on those issues important?
My brother John’s struggles, which took place while I was working my way up the ranks as a medical writer, certainly provided a visceral reminder that we have the most advanced health care in the world in the United States, but not everyone benefits. It’s easy for me as a writer to get caught up in the “shiny new thing” aspect of medicine. I love writing about new treatments that extend lives. But I try to remember that not everyone has access to those treatments.
The United States is becoming increasingly diverse in terms of race and ethnicity. When I graduated from college in 1979, about 80% of people in the US were white. Today, about 60% of Americans are white, while 19% are Latino or Hispanic and 12% are Black. Asian Americans and native Americans also make up substantial percentages of the population.
Unfortunately, people of color are more likely to develop chronic illnesses like diabetes and heart disease, and die prematurely, compared with white people. While the healthcare system has to evolve to better suit their needs, such disparities are also driven by social and economic factors, such as food insecurity, lack of stable housing, and lack of affordable health insurance.
It’s a huge problem. I think the solution starts with listening to patients, really listening to the people diagnosed with illness or who develop a substance abuse disorder, and asking them what they need to receive in order to get better. And then working to provide it.
And in what other health sectors do we see racial and economic inequities?
Oh gosh, take your pick. I can’t think of a health sector where such inequities don’t exist. Again, not to bash the health care system alone. We really need more of a robust public health system in this country, and address structural racism in housing, education, and employment, if we hope to alleviate health care disparities.
The General Assembly has just convened. What are the most pressing health issues for Rhode Islanders would you hope they address?
My personal top three would be: Address the housing crisis so people have a safe, affordable place to live. Take steps to alleviate food insecurity (especially by providing free school meals to kids). That’s because access to housing and food really are key fundamentals of good physical health. And improve access to mental health services for people of all ages.
If you had a magic wand, how would you design a just and equitable healthcare system for the state and nation?
Single payer, government funded, universal health insurance. Combined with price controls for medical services and medications. (Pie in the sky, I know, but we’re talking magic wands, right?)
I think it’s absurd that we are the wealthiest country in the world, yet about 25 million Americans lack health insurance, and millions of others have insurance plans that require large deductibles and copayments. It’s no wonder people have trouble accessing care. If we want more equitable health care, then we have to even the playing field in terms of insurance.
I also think a single payer system would make it easier for doctors and hospitals to collect money they are owed. Having witnessed this on the inside at hospitals, I am appalled at how much time doctors and hospital staff have to spend chasing down reimbursements from various insurers who have different “rules” and who sometimes put up barriers to collection because they don’t want to pay for care.
Of course, hospitals and doctors would also have to agree to limits on what they can charge. Steven Brill’s article in Time a decade ago, “Bitter Pill,” documented in stunning detail how hospitals can manipulate prices depending on a patient’s insurance coverage.
Obamacare was a big step in the right direction. I hope we are able to see the system evolve further.
Ann MacDonald is a freelance writer living in Rhode Island and a regular contributor to Ocean State Stories.
