It helped to save his life: Universal health insurance in Massachusetts

Tim [not his real name] was not feeling well, but didn’t see a doctor because he had no health insurance. He was uninsured for several years before he contacted Health Care for All’s HelpLine. The counselor helped him apply for benefits over the phone. Tim says, “Without Commonwealth Care, it would be nearly impossible to find an affordable health insurance plan.” Since becoming insured and seeing a doctor, Tim was diagnosed with diabetes and is being treated. It’s clear to him that getting insurance through Commonwealth Care and finally visiting a doctor helped to save his life.

The flip side of Tim's story from the files of Health Care for All is seen in a story from my aunt's life. The timely diagnosis and treatment of diabetes may well have given extra years of active life to my aunt, Anne Troutman, as well. A very high-energy woman into her 70s, she loved to travel. She didn’t treat the poor circulation in her feet, and required an amputation of her big toe late in life. That greatly reduced her ability to get around, and her quality of life. We don’t know how much she knew about her diabetes and self-care, for she died, not long afterward, of a heart attack. Clearly, a doctor could have helped her, as Tim’s doctor is helping him.

Advice: Ask your friends if they have health insurance, and refer them to the HelpLine at 800-272-4232 if not. The HelpLine answers questions about healthcare in Massachusetts, including co-payments, health insurance rules, directions, program eligibility, and much more.

Read another story about care for the uninsured.

Thanks to Amy Franz for the source story in the Fall 2008 newsletter of Health Care for All.

A buffer and enabler for the patient: VIP care

Dr. Victoria McEvoy on VIP care:
One Emergency Room doctor told me recently about a VIP patient who came to the ER complaining of chest pain. The patient's visit triggered a cascade of events at the hospital administration level. The "VIP Office" sent a delegate to smooth the way, and the patient came with his own personal physician, who was there to serve as a buffer and enabler for the patient. Not only was the "physician bodyguard" not in the right specialty for the complaint and age of the patient, but the physician gave orders: "Call the cardiologist and get an echocardiogram."

Both the resident and the responsible physician thought the patient's problem was gastro-intestinal: he had swallowed a huge antibiotic pill without water, and the esophagus was irritated enough to cause the chest pain. Instead of quickly looking at the patient's esophagus, hours were wasted getting cardiology and cardiac tests which were not needed. His VIP status delayed him getting proper care.

Advice to Very Important Persons: If you bring in your personal physician, make sure they will listen to other doctors' opinions.

Read a celebrity drug error story.

Thanks to Dr. Victoria McEvoy for the source article in yesterday's Boston Globe.

It's not who he is: Misdiagnosis of autism

Jeremy is a 20-year-old young man who lives in Columbia, Missouri, and works on the "Mizzou" college campus as a volunteer, cleaning classrooms.

From the looks of him, you can't tell Jeremy has autism. He has a high functioning form called Aspergers. Doctors didn't diagnose him until he was 16. Before then, Jeremy said he had complications stacked up against him from doctors not knowing much about autism.

"They put me on several drugs and misdiagnosed me several times," said Jeremy. "Those were probably the most catastrophic years of my life, being misdiagnosed, being on those drugs, being treated poorly by the school, of their ignorance of autism, of my condition."

Now "his autism does play a part in his life, plays a big part, but it is not who he is," said his mother, Robin. "He is someone who has dreams and aspirations, who has many skills, who has a kind heart, who likes to volunteer, likes to help people... that is who Jeremy is."

Despite the difficulties he faces, Jeremy has no tolerance for those who want to "cure" autism.

"It's insulting to me because it is saying, you know, when people say, 'I am not going to try to understand this, I just want to cure it.' When it is actually something neurological. It is hard-wired into your brain. There is nothing you can do about it. That is just the way it is. They just want a cure, they don't want to understand it. They don't need to treat it. They don't want to deal with it. It is a lifelong thing," said Jeremy.

Advice to people whose drugs aren't helping: Find other people in your situation; they might help you learn a more accurate diagnosis.

Browse for similar stories in our index at the very bottom of this page, or read another delayed diagnosis story.

Thanks to Ashley Reynolds for the source story.

She has broken two ribs from coughing: C.O.P.D. and prednisone side effects

For many, trying to control chronic obstructive pulmonary disease (COPD), rather than be controlled by it, is a daily struggle. Diane Williams Hymons, 57, a social service consultant and therapist in Silver Spring, Maryland, has had lifelong problems with bronchitis, allergies and asthma. In the last five or ten years her breathing difficulties have worsened, but she was told only three years ago that she had COPD. It motivated her to give up cigarettes, after smoking for more than 30 years.

"I have good days, and days that aren’t as great," she said. "I sometimes have trouble walking up steps. I have to stop and catch my breath."

She is "usually fine" when sitting, she says.

Her mother, also a former smoker with chronic lung disease, has been in a pulmonary rehabilitation program. Diane's doctor has not recommended such a program for her, but she has no idea why. They have discussed surgery to remove part of her lungs, which helps some people with emphysema, but she said no decision had been made yet because it is not clear whether her main problem is emphysema, or asthma. She is not sure what her prognosis is.

She has been taking prednisone for years, something both she and her doctor know is risky. But when she tries to cut back, the disease flares up. She has many side effects from the drug.

"My bone density is not looking real good," she said. "I have cramps in my hands and feet, weight gain and bloating, the moon face, excess facial hair, fat deposits between my shoulder blades."

She has broken two ribs just from coughing, probably because the prednisone has thinned her bones, she said. She went to a hospital for the rib pain last year and was given so much asthma medication to stop the coughing that it caused an abnormal heart rhythm. She wound up in the cardiac unit for five days, and now says "never again" to being hospitalized.

Her doctor orders regular bone density tests.

"I know he's concerned, like I’m concerned," she said, "but we can't seem to kind of get things under control."

Advice to long-time smokers: Ask your doctor if you might have C.O.P.D.

Browse for related stories in the index at the very bottom of this page, or read a C.O.P.D. story.

Thanks to Denise Grady for the source article in today's New York Times.

She can still recall the day: Lyme Disease misdiagnosis

Diane Blanchard can still recall the day 20 years ago when a tick attached itself to the nape of her neck while she was gardening on Long Island, outside of New York City. She never had the characteristic bull’s-eye rash of Lyme Disease, and her diagnosed was delayed until the next year. Her doctor prescribed a three-week course of antibiotics.

But her symptoms persisted for ten years, until she learned she had a lingering form of the disease. Nine years of on and off treatment with antibiotics followed.

"None of us want to take antibiotics, but if it is the only remedy that is offered at this moment that gives us relief, that allows us to function, then we’re stuck," she said. "We wish we could find a cure. Until we do, we must remain open-minded."

Now she is the co-president of Time for Lyme, an advocacy group.

Advice: Spray your ankles with DEET bug spray before going into the woods, and check yourself afterwards.

Read another of our Lyme Disease stories, or read Stephen Smith’s source story in today’s Boston Globe.

He’s fulfilling a promise: Breast cancer misdiagnosis

Bill realized on their first date that he was looking at his future wife. After their second date he and Maureen moved in together and never parted. Eventually they had two sons, Erik and Ryan. Happily living together, active in their church and well-loved in their community, they were your average working-class American couple, Bill says.

In late 1994, Maureen found a small lump in her left breast while performing self-examination. Over the next two and a half years, three different doctors told Maureen she had absolutely nothing to worry about, that the lumps in her breast were harmless fibroid cysts. Once her cancer was finally diagnosed, she lived only one year, undergoing radical mastectomies, multiple surgeries, chemotherapies and stem-cell replacement therapy.

Maureen Thiel passed away at 43 due to a delayed diagnosis of breast cancer. She left behind a husband and two young sons. Maureen's story is a tragically shocking case of a deadly misdiagnosis that clearly demonstrates the need for a Universal Standard of Care for the diagnosis, treatment and follow-up of breast lumps.

According to he Universal Standard, a biopsy would have been performed on Maureen within a month after she first found a lump. If she had received an earlier biopsy, there is a good chance she would still be alive today, a good chance her devoted husband, Bill, would still have a wife, a good chance their two sons, Erik and Ryan, would still have a mom.

Maureen's Mission is the fulfillment of a promise a husband made to his dying wife.

Advice: Become an advocate, as Bill Thiel has.

Read another of our breast cancer stories, or the source and web site of the nonprofit organization, Maureen’s Mission.

Surgeons couldn’t reverse the damage: A healthcare access parable

While his mother was seeking help for his younger brother whose six decayed teeth were causing him pain, Deamonte Driver had a toothache from a single abscessed tooth. A dental abscess is a collection of infected material, pus, resulting from bacterial infection of the center, or pulp, of the tooth. It often is a complication of tooth decay—an untreated cavity.

Bacteria from the abscess spread to his brain. By then, two operations and more than six weeks of hospitalization could not reverse the damage. Deamonte died at age 12, in early March.

Deamonte’s mother worked at several jobs. Even so, the family had to live in a homeless shelter. In changing addresses, they lost Medicaid coverage, which would have paid for the life-saving treatment. US congressmen discussed his case yesterday in hearings. Perhaps hearing his story will ultimately save other children’s lives.

Advice: Let your kids see you brushing and flossing your teeth—you’re their best role model.

Read another dental story, or read Diana Rossetti’s source story.

His diagnosis was a Sports section headline: A delayed diagnosis story

It’s the first day of spring, so we think of baseball. A few short years ago, David Wells helped the Boston Red Sox win their first World Series in 86 years. The lefty pitcher was known for his great curve ball, great girth, and great thirst.

Now with the San Diego Padres, the 43-year old pitcher has been diagnosed in the last two weeks with adult onset diabetes, according to yesterday’s Boston Herald. Last year, his manager had had to cancel a pitching start for him last fall because of gout in his right foot. Gout, which can be temporarily excruciating and disabling, is common among people with diabetes. With more prompt diagnosis and treatment, Wells would have had better blood circulation to his feet, which may have prevented uric acid from building up there, which caused his gout and missed start. And if the Boston Red Sox had kept him...Woulda Coulda Shoulda.

Advice for Red Sox fans: Believe! And watch out for diabetes, now growing at an epidemic pace. Make sure your off-season exercise is more than hoisting beer bottles!

Read another diabetes story .