From disguised sources to courageous patients: My 30 years on the health care beat

From disguised sources to courageous patients: My 30 years on the health care beat

Many years ago, I walked into The Record’s newsroom on River Street in Hackensack to try out for a job. I was young, two years into my journalism career and newly arrived from the Associated Press bureau in Honolulu.

A few years later, after covering municipal beats in Bergen and Passaic counties, I moved up to the health care beat, which had been vacated by a reporter who went on maternity leave and didn’t come back. 

Now, after more than 30 years covering health care in New Jersey, I’ve taken a buyout. The time has come for me to say goodbye to daily journalism at and to the readers whose feedback and ideas have helped shape my reporting.

One of them showed up at my door on Halloween night in 2021 — an adult in a Raggedy Ann costume clutching an envelope with my name on it. The secret documents it contained laid bare theand led to the exit of its chief medical officer after the hospital’s remarkable work during the pandemic. They showed an institution divided at the highest level over how to respond to the George Floyd killing.

The previous year, another whistleblower sent me an anonymous, encrypted email urging me to report the high number of COVID deaths inside the New Jersey Veterans Home in Paramus. “Please send documentation,” I wrote back, and the tipster — who has since , now retired — did. The rest is history: Nearly 90 residents of the home have died of COVID. The CEO, the director of veterans health care services and the commissioner of Military and Veterans Affairs all lost their jobs.

Some whistleblowers file lawsuits. A wrongful-discharge lawsuit in Superior Court in Bergen County led me to a . He had raised concerns about potential defects in surgical sterilization containers that hadn’t been reported to the federal government for 11 years, and about the safety of a product being developed for use in post-mastectomy breast reconstruction.

Another case was filed in federal court by a nurse who worked for a hospice company that specializes in nursing home patients. by fraudulently billing for hospice care of people who weren’t actually dying. If the government recoups money as a result of her filing, she stands to get a percentage.

If you’re thinking about blowing the whistle on a company or institution, here’s a piece of advice: Be ready to supply verifiable documents or get yourself a lawyer or agree to be interviewed — all three, if possible. 

A health care writer’s inbox is always full of breathless announcements about treatments that promise to save or transform patients’ lives. After years of covering some of those stories — and ignoring others — I decided to go back and see what had happened to a few whose lives had been saved or profoundly altered by these novel treatments.

Had they reverted to their pre-injury or pre-illness way of life? Given a second chance, had they found a new purpose in life or experienced a spiritual awakening?

Life never returns to the way it was before, most of them told me. There’s always a new normal, often involving anti-rejection drugs, post-operative monitoring and changes in one’s daily routines.

And repeatedly, I heard that the fondest desire of those who’d endured the toughest treatments was simply to get back to life’s quotidian pleasures. It’s the small things that give life meaning.

A man who’d cherished his weekends watching Rutgers football. A woman whose body experienced an immune storm and lapsed into a coma while an experimental treatment destroyed her cancer cells thrilled at the chance to again play 18 holes of golf.

A Parkinson’s disease patient who received two surgically implanted deep-brain stimulators told me straight up: “I just want to walk around the neighborhood. I want to drive to the deli to get a cup of coffee.”

The sleeper hit of all the stories I’ve written was a profile of Sandy Hillburn, a 16-year survivor of glioblastoma, a type of brain tumor with a median life expectancy of 15 months.

When I first wrote about Sandy in December 2015, she was 10 years out from surgery and a decade into treatment with an experimental vaccine that used her own modified blood cells to stimulate an immune response so her body would attack the tumor. She was her study’s sole survivor.

I met her in Fort Lee to join her daily walk up and down its steep hills and interview her. A few days later, I accompanied Sandy on her 111th visit to Duke University’s Cancer Center in Durham, North Carolina, for the vaccine injection, which then took place every six weeks. 

Sandy was and remains a beloved celebrity at Duke's Preston Robert Tisch Brain Tumor Center. She embodies its purpose: to bring hope to patients with brain tumors, who often have none. The center’s deputy director, Dr. Henry Friedman, still calls her every Sunday afternoon, as he has done since her treatment started.

The popularity of her story has become clear in’s metrics. In January 2023 alone — seven years after it was first posted — it was viewed more than 500 times.

And it has circled the globe. I’ve received emails from dozens of newly diagnosed glioblastoma patients (or, more often, their loved ones) who are searching for treatment options. They’ve written from India, Ireland, Australia, South Africa and all over the United States.

They usually have two questions: Is Sandy still alive? And how can they get the treatment she received? I respond and forward the messages to Sandy, who still is most enthusiastically alive.

This is what that story taught me: Hope is the most important thing you can give people. I was merely the vehicle. 

If you’ve ever tried to sleep the night before cancer surgery, you know that being a patient takes courage. A Ridgefield doctor showed me one face of bravery as he sat in his hospital bed and watched stem cells flow through an IV into his chest port during treatment for amyloidosis. 

Another sort of courage is demanded of those in recovery from alcohol or substance-use disorder, for whom every day is a test of strength. who visit North Jersey churches to sing “Ooh-oo, child, things are going to get easier,” told me about that between their rehearsals.

Professional caregivers, especially nurses, shared stories of fear, sacrifice and tenacity during the COVID-19 pandemic. They went to work when there weren’t enough masks and their protective gowns were fashioned of garbage bags, yet they still managed to stroke the hands of the dying with compassion. I will never forget them. I hope no one does.

Parents, too, showed a boldness they didn’t know they possessed as they fought to get their children the care they needed. A mother in Ramsey, her son born comatose and brain-damaged after he became entangled in his umbilical cord while in utero, fought an insurance company, and later Medicaid, when his in-home nursing benefits were to be cut off. And a mother in Teaneck told me what it was like to be nearly housebound after she brought her son, a strapping adolescent with severe autism and self-injurious behavior, out of a residential care facility to the safety of home.

Despite my job, I feel like a shy person. I’ve written just twice about my personal experiences with the medical system — and been surprised each time at the generosity and volume of readers’ responses.

In 2007, I described being diagnosed and treated for breast cancer. My articles were part of a series with a colleague who wrote about her role as caregiver to her husband with cancer. Readers shared their own experiences, called and mailed messages of support and sent blankets and yoga CDs.

More recently, I wrote about my . I was one of the first people to actually receive the mRNA vaccine before its authorization for widespread use by the federal Food and Drug Administration, I learned when we participants were “unblinded,” or told whether we’d received a placebo or the real thing.

Readers were intensely interested as they considered getting vaccinated themselves. How had it felt? What were the side effects? Some thanked me.

Studies may show results for a large population, but for a sick person, the only result that matters is their own. For every story, I’ve tried to find the real-life example and put a human face on a treatment or experience.

My job as a journalist starts during the interview. Listening is a privilege, even if not every detail makes it into the story. Bearing witness gives meaning to people’s suffering.

Sometimes, stories facilitate connections. Patients realize they are not alone. They become motivated to take action together.

For example, after I wrote about a because of a genetic abnormality, a group of families whose loved ones had died of the same problem formed a group to lobby the Food and Drug Administration and press medical authorities for widespread use of a test to detect the defect.

And sometimes, stories bring reform or accountability. Leaders are replaced or laws are passed or a nursing home improves its infection control practices.

I’m not sure what’s next for me. More time at the gym? Read Shakespeare? Play the piano? Take watercolor lessons? 

But perhaps I will write about the tragedy of early onset Alzheimer’s, which has stolen the mind, but not the body, of my once-brilliant 60-year-old sister. Or about how my 26-year-old son, on a road trip through Nashville, called one morning to say he was very sick and within hours became a research subject for a non-surgical treatment for appendicitis that was approved last year. Or about pulmonary hypertension, a woefully under-diagnosed chronic disease that slowly sucked the breath from my mother’s lungs. Or about the particular worries of long-distance caregivers — like me — for elderly parents.

There are so many compelling stories to tell — about life and death, sickness and health, courage and bravery.

Thank you for reading the stories I’ve written. Thank you for sharing your stories with me.