The Price of Being a Patient

Whatever benefits modern medicine has for patients, I've experienced first-hand its power to undermine your ordinary life. In the spring, I switched primary care providers when I became frustrated with my long-time PCP's sluggish response to several urgent medical problems. When I gave my new PCP a sticky note listing a few medical concerns of mine at our first meeting, however, I inadvertently triggered an avalanche of medical appointments. She gave me a few referrals to specialists, including physical therapy to resolve some old injuries, and as I dutifully worked my way through the list I watched my time slip away. Add to that several medical checkups for my children, and the time drain was enormous.

Perhaps unwisely, I added it all up: six medical appointments in April (one of them for a child), and nine in May (one for a child). Some were mercifully clustered around a medical campus in the north part of city, some in the south part of the city, and two were east or west of the medical campus. Some providers collected co-pays on the spot, and others sent a big fat bill later on ("What's this?" my husband asked, waving an itemized list of co-pays in the air recently). To complicate things further, my insurance company periodically sent me bills for provider visits recommended by my PCP that they only covered partially.

My experience was typical, according to a poll of women's views of health care released today by the American Academy of Family Physicians (AAFP). The Harris Interactive poll of 1,270 women, commissioned by the AAFP, found that cost and time constraints were the top challenges women faced in obtaining health care for themselves and their families (in San Francisco, I would add "parking"). The AAFP used the poll's data to advocate for a medical home model, where all medical care is coordinated through a primary care physician and streamlined through technology such as electronic medical records, e-prescribing, and emails between patients and providers.

Considering the number of uninsured Americans, I'm supposed to write that I'm grateful to have decent medical insurance -- which I am, of course. I'm also grateful, however, for the new clients I gained in May, whose work, out of necessity, took up many nights and weekends this month as I juggled interesting new assignments with a relentless march of medical appointments. I'm equally grateful, as these appointments wind down at last, that I'm not coping with a chronic condition that requires frequent provider visits, and co-pays or bills for visits, prescriptions, or durable medical equipment.

At the end of May now, I have finished my assignments and met my target number of work hours, although I spent less time than I wanted to with my children. Luckily, I managed to squeeze in a weekday off to play hooky with my older daughter recently, who had a rough month at school. We both needed the break.

The VA and Soldier Suicides

Yes, here I am dipping my toe into health care policy once again. But I can’t help but react to the announcement this week from the National Institute of Mental Health that suicide rates among soldiers and veterans who fought in Iraq and Afghanistan might exceed combat deaths. As of May 7, 2008, the Department of Defense casualty statistics state that 4,071 soldiers have died in the Iraq conflict, and 492 have died in the Afghanistan conflict. Veterans Affairs secretary Dr. James Peake admitted to Congress this week that there are probably over 1,000 suicide attempts per month by patients within the VA system. In 2007, a VA official said that only 790 soldiers attempted suicide that year; the VA has been accused of under-reporting suicide rates.

Technical and medical advances have greatly improved survival rates for soldiers injured on the battlefield, but as a result there are more seriously injured veterans to treat within the VA system, according to Government Executive.com. A RAND Corporation study estimates that about 300,000 returning Iraq and Afghanistan soldiers have post-traumatic stress disorder (only half receive treatment for PTSD), and 320,000 have a traumatic brain injury.

I remember that in 2006, the VA was widely praised as a model health care system. In fact, I assigned a story on this very topic to a freelance writer I worked with. The VA boasted an efficient, timesaving electronic medical record (EMR) system, geographically widespread facilities, access to and support of new medical treatments and techniques, and lower prescription drug costs than many private health plans due to bulk drug purchases. The VA has been considered a possible model for a nationwide universal health care plan.

Its image has been tarnished more recently, with the mismanagement and neglect at Walter Reed Army Medical Center reported by the Washington Post in 2007, for example. There is currently a class-action lawsuit against the VA in San Francisco, contending that the VA provides inadequate mental health services. Furthermore, many middle-income veterans and their families are ineligible for VA coverage, due to enrollment restrictions imposed by the Bush administration in 2003, Physicians for a National Health Program told Forbes.com last year.

The fundamental problem is limited funding, which threatens the VA every year. This problem will only get worse as soldiers continue to return home with complex and expensive mental and physical health problems. The suicide rate is a stark reminder that the VA has failed to help these people.

Gender and Cancer Vaccines

A number of cancer vaccines are on the market or under investigation right now, many targeted to gender-specific cancers. Along with the FDA-approved Gardasil(TM) HPV vaccine, which can prevent certain types of cervical cancer, trials are underway on the prostate cancer vaccine GVAX(R), a breast cancer vaccine, and another cervical cancer vaccine.

One important difference between all these vaccines is that Gardasil is given before any cancer diagnosis, and the other vaccines under trial that I mentioned are given after a cancer diagnosis in addition to standard cancer treatment. These post-diagnosis vaccines seem to be the trend with cancer vaccines, despite the heavy marketing of Gardasil. These vaccines are designed to "retrain" the patient's immune system to respond more effectively to proteins associated with cancer cells. Some of these vaccines are developed using the patient's own cells, and other are not.

Two promising post-diagnosis vaccines under investigation that are not gender-specific target lung cancer (the most deadly cancer among both men and women) and cutaneous melanoma (which is more deadly among men than among women).

I'm curious about the gender differences between cancer vaccines. Do women respond more favorably than men to cancer vaccines, or vice versa? Are vaccines that use the patient's own cells more or less effective than those that don't? Are vaccines for gender-specific cancers, such as prostate and cervical cancer, more or less effective than vaccines for cancers that can strike both genders? There might be no patterns here, but if there are, it would be interesting to see how physiology, sociology, and other factors impact the effectiveness of these vaccines.

BPA and Baby Bottles

A chemical often used to manufacture infant bottles, water bottles, and food packaging might be harmful to humans, according to a draft brief released this week by the NIH-funded National Toxicology Program's (NTP) Center for the Evaluation of Risks to Human Reproduction (CERHR). The NTP reviewed a number of mostly animal studies that indicated that Bisphenol A (BPA), used in resins and polycarbonate plastics, might cause neural changes, precancerous prostate and breast lesions, and early puberty, among other problems, at fairly low doses. At significantly higher doses than humans are likely to encounter, BPA has been proven to slow puberty and growth, and decrease survival rates in animal studies.

Although BPA is also sometimes found in tableware, medical devices, dental sealants, and automobiles, among other places, the draft brief stated that humans primarily absorb BPA though food and drink. The U.S. produces 2.3 billion pounds of BPA yearly, and infants and children have the greatest exposure to the chemical "because they eat, drink and breathe more than adults on a pound for pound basis," the report stated.

The draft brief points out that most ingested BPA is metabolized and eliminated in the urine. The remaining ("free") BPA in the body is probably harmful. Based on evidence from animal studies, infants and young children are thought to be less efficient at metabolizing and excreting BPA than adults, the draft brief states, so they retain higher levels of free BPA in their bodies. The draft brief also says that BPA seems to leach more easily from plastic into foods when the food is heated. As such, baby bottles (often heated up, of course, before given to the baby) seem like an especially potent source of exposure in infants.

Formula-fed infants aged 0 to 6 months, who are exposed to BPA primarily though baby bottles but also through the packaging of formula containers, might absorb about ten times the amount of BPA as a breast-fed infant, according to the draft brief.

I find this information, and the pervasiveness of BPA in the environment, disturbing news. I first read about the NTP draft brief in a story on the Washington Post online, and the writer considered the report's findings worrisome. A number of other online news outlets, such as Fox Business, on the other hand, chose to run the press release on BPA from the American Chemistry Council as an article. The American Chemistry Council press release, not surprisingly, states that the NTP draft brief proves that there are no serious human reproduction concerns about BPA.

Yes, the data is based primarily on animal rather than human studies, and the authors of the NTP draft brief pointed out a number of limitations to the studies they looked at, such the reproducibility and structure of some studies. I still think that the information in the NTP draft brief is too important to be dismissed – especially for parents, who have been concerned about the plastics in baby bottles for years.

Parents and Infant Swim Lessons

A recent article in the San Francisco Chronicle on infant swimming shined a light on the psychology of parents in the Bay Area. The article discussed the American Academy of Pediatrics' official policy statement on infant swimming programs, in light of a local and nationwide boom in these programs. The AAP argues that children are not developmentally or cognitively ready to swim safely until they are four or older, and learning to swim earlier may give parents a false sense of security.

Despite these warnings, the popular and expensive La Petite Baleen program in the Bay Area, which often boasts a waitlist to get into classes, begins training children to be submerged in the water when they are just two months old. A new La Petite Baleen site is slated to open in June in the Presidio in San Francisco, and there are already 1,000 children enrolled, the article stated.

New parents are marketed to relentlessly. I still remember the box of formula that the postman shoved through my gate when I was pregnant with my first child (a product that I didn't want or need), and the mailings I received from Gerber and other companies who knew my due date, probably because my doctor's office had sold them the information. I heard a constant drumbeat of advice and buying information as a new parent, some of it from valid sources and some not.

I succumbed to the marketing as well, I think. Did I buy a Britax car seat and a Hanna Andersson jacket for my daughter because they were the best items on the market, or because being able to afford these things was a marker of my social class as a parent? I probably made these purchases for both reasons. Similarly, I think that the popularity of infant swim classes also has an element of status in it.

Are parents enrolling their young children in La Petite Baleen classes because they think that the AAP is wrong and swim lessons are good for infants and toddlers? Perhaps. Equally compelling, I think, is the social status that attending the school confers to the parents, which trumps anything the AAP says.

Art and Medicine

Since the American Academy of Orthopaedic Surgeons (AAOS) is celebrating its 75^th anniversary this year, the AAOS had a special display of art by patients and surgeons at its annual conference earlier this month in San Francisco. I first noticed the exhibit, called eMotion Pictures: An Exhibition of Orthopaedics in Art, as I was hurrying into Moscone West to catch a session I was covering on the third floor.

In the press room, I picked up a book the AAOS had put together describing the artwork, and I paged through it in my few quiet moments. By the end of the week, I had passed by the large bridge-shaped sculpture “Bone Rainbow” many times, although I did not initially notice that the bridge’s crossbars were made of bronze femurs. The artist, Ruth Cozen Snyder, had been injured in a car accident, and said in her artist’s statement that creating art had helped her cope with and recover from her injuries. Much of the patient art I saw and read about tried to make sense of, and rise above, the pain and disability that many patients faced.

My favorite piece was a painting by an orthopoaedic surgeon, called “Nothing About You Without You.” In the painting, a patient with a cast on his right foot and a sombrero hiding his face straddles a chair next to a vivid orange wall, the colors and clothing reminiscent of Central or South America. I was struck by the description of the work by the artist, S. Terry Canale, MD, who said that “with an increasingly diverse patient population, [orthopaedic surgeons] need to become more culturally competent, treating patients of all cultures with respect and practicing patient-centered care.”

The Journal of the American Medical Association always features artwork on its cover, as an antidote perhaps to the technical articles inside. At the AAOS conference, it was refreshing to see such striking artwork as I ducked in and out of PowerPoint presentations featuring sutured knees, diseased hips, and MRSA infection statistics. It was a reminder that there are human beings on either side of the scalpel.