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Saturday, October 31, 2009

Before he had health insurance: The public option in health insurance reform

On this scary Halloween, it's comforting to see that the U.S. House of Representatives is including a public option in its healthcare reform bill.

The House bill, if it passes, could save the lives of many very ill people – like Fred Holliday. With insurance coverage for a physical exam, Fred might have received prompt detection and treatment.

Dr. Rahul Parikh describes what had happened instead, as told to him by Fred's widow, Regina Holliday:

Fred Holliday developed the early symptoms of his disease-fatigue, weight loss and occasional blood in his urine - before he had health insurance. In late 2008, his insurance kicked in after he got a job at American University teaching film studies. Last January, he developed low back pain. He went to see his doctor multiple times. Each time, she prescribed pain medication, but his pain worsened. Regina wondered: if Fred just had muscle pain, then why the night sweats? Why the blood tinged urine? Why didn't his clothes fit him anymore? Still, Fred's doctor didn't reconsider her diagnosis and treatment.

His pain worsened. In March, Regina demanded more. Fred's doctor ordered an MRI of his back. Three days later, they got a call telling them that he had "shadowing over his kidneys." What that meant wasn't entirely clear, but the next thing Fred and Regina knew, they were in the office of a Maryland oncologist, who admitted them to a hospital in Silver Spring for further tests.

On Friday, March 27 around 11 am, Regina was at work when Fred called. He was crying. "I think the doctor just told me I have cancer," he managed to tell her.

What exactly did the doctor say? Fred remembered being told that he had a growth on his kidneys. Regina rushed into see the doctor, but he had left town for the weekend. They had to wait until the next day before another doctor (not an oncologist) tried to clarify his diagnosis: it looked like he had stage IV metastatic renal cell carcinoma. That jumble of words didn't make any sense. Regina went onto the Internet. Wikipedia turned out to be more helpful than Fred's doctors.

When their oncologist returned, he was curt and often distracted by his cell phone. He didn't like Regina's detailed questions, telling Fred that, "If Miss type-A personality wants me to answer her questions, she can come to my office hours."

In retrospect, Regina believes that if Fred's doctor had been clear about his prognosis from the beginning, he may have made the decision to stop fighting sooner. Instead, he informed him of how he could fight: surgeries, radiation, and chemotherapy. So he decided he needed more advanced care than what Holy Cross could provide.

Patient transfers between hospitals are normally the responsibility of doctors who work there. The hospital's doctors, however, told her they had not been able to find another center willing to accept him. So Regina contacted her own internist, who sat on the board of directors at a hospital in Bethesda. After hearing Fred's story, he pulled strings and arranged a transfer.

The Hollidays arrived at there four weeks after Fred's diagnosis. The first thing they learned was that he needed surgery to repair a broken hip - which happened after an orderly at the first hospital bumped him into a wall while he was moving Fred on a gurney. Fred had been complaining of severe hip pain for two weeks, but nobody there had followed up on it. All it would have taken was an x-ray.

After surgery, his new oncologist ordered a chemotherapy drug called Sutent. While his health insurer approved the drug, Fred's doctor told Regina that the pharmacy refused to order it. At $40,000 for a 28-day supply, it was too expensive. "Sometimes this happens," Fred's doctor told her. So Regina had the drug mailed home, picked it up, tucked it safely into a fanny pack, and dispensed a dose to her husband each day.

Fred's cancer advanced. He still couldn't walk. He had become incontinent. The doctors decided to transfer him to a rehabilitation center with the goal of getting him to walk again. Once he was there, Regina’s duties as his caregiver intensified. She learned where the center's storage closets were so she could collect fresh sheets and change them herself. She emptied his trash, and changed and disposed of his bedpans.

While he was in the hospital, Fred required blood transfusions every 10-14 days. Regina knew when he needed them because he would begin to get very tired, eat, move, and talk less. One afternoon, this is just what happened. At the hospital, it was easy to ask the nurse to get a blood test to know just how low his counts were. In the rehab center, they only did blood tests once every morning, no exceptions. So Fred suffered until morning came and his test confirmed what he and Regina knew the day before.

Fred would had to be re-hospitalized. Fred continued to deteriorate. It quickly became a question of how much longer to fight. On May 19th, he was moved to hospice care to get his pain under control and on June 11th, he went home. On June 17th, less than three months after he was diagnosed with cancer, Fred Holliday died at home. Ironically, this was the same day that the United States Senate began debating health care reform.

Advice: Call your congressman and ask them to support health insurance reform with a strong public option. Commercial insurers might prefer not to insure someone like Fred - or like you.

Read another story about the lack of health insurance. Thanks to Dr. Rahul Parikh for the source blogpost, and e-patient Dave Bronkart.

Thursday, October 29, 2009

Magnificent at times: Jeremiah Mead & advances in respiratory research

In the famous joke by Woody Allen, two Jewish women are commenting on the food at a resort in the Catskill Mountains. One says, "The food is terrible here." The other responds sadly, "And the portions are so small!"

I often feel that my comments on healthcare are similar: It's so bad. And there's way too little of it! Yet sometimes I realize that our healthcare is also magnificent at times, and life-saving – as in the healthy birth of my son, 19 years ago.

My wife started labor nine weeks prematurely. Doctors were able to stop the labor from progressing, and gave my son the drug beta dimethasone to speed the maturation of his lungs. In a fetus' development in the third trimester, the walls of the lungs initially stick together, and can’t inflate with air, until a chemical surfactant is released. At that point, the lungs can inflate and deflate appropriately, readying the baby to breathe upon birth.

If a baby is born prematurely, before the surfactant changes the lungs in this way, respiratory distress syndrome can result, often fatally. In the past, this caused the deaths of 50,000 premature babies each year.

My wife got the drug in time, and it somehow made its way to Neil's lungs, triggering the release of the surfactant, before he was born a few days later. He didn't get RDS, and he didn't need a ventilator. He has long been in excellent health, and he's bigger and more muscular than me now.

Dr. Jeremiah Mead was the scientist who discovered the role of the surfactant, and opened the way for a series of discoveries that now make RDS much less frequent. I learned this only in reading his obituary; he died at age 88 in mid-August.

In a colleague's words, "his major contribution is that he set the agenda in respiratory mechanics, and posed the questions that everyone else picked up."

Read another NICU story.

Thanks to Emma Stickgold for the source article in the Boston Globe of August 18.

Wednesday, October 28, 2009

I freak out when he has a runny nose: PTSD in NICU preemies' parents

Kim Roscoe's son Jaxon was born three months early, weighing only two and a half pounds. For nine days he did exceedingly well in the NICU (neonatal intensive care unit). Then, on Day 10 he went into respiratory and kidney failure, and his body had swollen beyond recognition. "He was hooked up to ventilators, his skin was turning black, the alarms kept dinging over and over," Kim recalls.

Jaxon is 16 months old now, home with his family. In the NICU for 186 days, he survived several near-death episodes.

During the six-month ordeal, his mother had constant nightmares. She became angry at the world, and so jumpy that she once thought that a supermarket scanner was one of Jaxon's monitors going off.

About three months after Jaxon's birth, she asked to see a psychiatrist. She received a diagnosis of PTSD (post-traumatic stress disorder). Doctors are increasingly recognizing PTSD among parents of premature infants in prolonged intensive care, according to a recent study in the journal Psychosomatics.

"The NICU was very much like a war zone, with the alarms, the noises, and death and sickness," Kim said. "You don't know who's going to die and who will go home healthy."

Experts say parents of NICU infants experience multiple traumas: the shockingly early birth itself, traumatic medical procedures and life-threatening events, and hearing very bad news that can keep coming.

Kim says that now she's coping with great anxiety about Jaxon, even now: "I still freak out if he has a runny nose. And when he gets a fever, I'm back in the NICU."

Advice to stressed parents of a NICU preemie: Keep in mind that there are very happy endings. My very healthy son just entered college, 19 years after his three-week stay in a NICU. Contact the March of Dimes NICU Family Support program, which offers psychological support to parents in 74 hospitals nationwide.

Read another NICU story.

Thanks to Laurie Tarkan for the source article in the New York Times of August 25.

Monday, October 26, 2009

Turning patients into scientists: Open source research like the LAM Treatment Alliance

After Amy Farber learned she had the rare and fatal disease called LAM (“lymphangioleiomyomatosis”) in 2005, she became determined to increase and speed up research into her illness, with the hope of finding a cure in her lifetime.

Now 39, she was a law student with a doctorate in anthropology, about to start a family. She quit law school and founded the LAM Treatment Alliance to raise money and connect a network of scientists around the world to research this mysterious disease, which destroys young women’s lungs.

With the help of Frank Moss’ Media Lab at the Massachusetts Institute of Technology (MIT), she created LAMsight, a Website that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease.

Amy Farber says this will empower patients to contribute, ask questions, and help lead the way to discoveries. Frank Moss agrees, adding that patients’ everyday experiences in living with the disease can generate new hypotheses and avenues for research. “We’re really turning patients into scientists and changing the balance of power between clinicians and scientists and patients,” he says. Supporters of this model call it “crowd sourcing” or “open source research,” and praise its democratization of research.

She hopes her website will become the largest database of active LAM patients. More than 100 registered users on five continents are already using it.

Advice to patients with rare diseases: Search the Web to see if a similar website is speeding research into your disease.

Read another story about PatientsLikeMe, a similar website for other rare diseases.

Thanks to Sarah Arnquist for the source article in the New York Times of August 26.

Monday, October 5, 2009

I was lucky: Lance Armstrong's pre-existing condition

Lance Armstrong's letter of October 2, 2009:
Today is LIVESTRONG Day. Thirteen years ago today, my doctor told me I had advanced testicular cancer. What most people don't know is that at the time, I didn't have health insurance. In the following weeks, I received letter after letter from the insurance company refusing to pay for my treatment. I was fighting for my life—but also for the coverage that I desperately needed.

The legislation currently being debated in Congress is not just words on a page—for many cancer survivors, it's a matter of life and death. Now, as this debate enters crunch time, I need your help to ensure that what happened to me doesn't happen to any other American.
No matter what side of the healthcare debate you're on, I believe we can all agree on two things:

No American should be denied health insurance coverage because of pre-existing conditions.
No American should lose their insurance due to changes in health or employment.
Will you sign the LIVESTRONG Action petition to make sure any legislation includes these two critically important reforms? We'll deliver these to Capitol Hill this month as the debate reaches its climax and make sure our voices are heard in the debate.

When I received my diagnosis, I was between cycling contracts. My new insurer used the diagnosis as a reason to deny coverage after the new contract was signed. Fortunately, one of my sponsors intervened. At their insistence, I was added to their insurance company and was able to continue my life-saving treatment. If my sponsor, a powerful company, had not gone to bat for me, I may not have made it.

I was lucky. We can't rely on luck to ensure coverage and treatment for the millions of Americans affected by cancer. Some cannot get coverage because they've already been diagnosed. Others get calls from their insurance companies saying they have been dropped. It happens all the time—and it's unacceptable.

Every year on LIVESTRONG Day, we come together to take action for a world without cancer. In the U.S., a critical step is to make sure cancer survivors can get and keep their health insurance.

It has been 13 years since my diagnosis, but in some ways, not much has changed. No person should have to worry about health insurance while battling cancer. That so many do is an outrage, and we must speak out.

-Lance and the LIVESTRONG Action Team

Advice: Please sign the petition and forward it along to your friends and family.

Read another Lance Armstrong story. Thanks to Hari Khalsa for forwarding the email.