Seeing Your Doctor for Prevention,
Treating On Your Own: A Report from the Field

First off, let me be clear: what I report below I am not recommending. My first obligation is to my readers. Also, I am grateful to Brooke Binkowski, a stellar journalist-friend, who spontaneously emailed me this story this morning. It arrived in my inbox amid a heated social-media discussion about who the real villains are in the failure to vaccinate. Also, why is it we can’t reach them. Are they the rich and entitled, the libertarians, the natural, organic folk, or who?

Sometimes, you hear a story and it makes you want to use it while it’s hot. This is a gem of a story, but it’s not really about vaccines very much. If you like it, you might want to follow Brooke at @brooklynmarie. She has a lot of great stories up her sleeve.

Here’s what Brooke wrote:

Because of who I am and where I live, I collect old hippies, you know, I feed them, talk to them, hang out with them… one of them stopped by yesterday, he’s about 70, an ex-drug runner, never has taken care of his health, has diabetes, and has had major heart surgery last year (I went to see him in the hospital.)

Anyway I said: “How have you been? He said, “Oh, I’ve been fine. I ran into complications recently, did something to my pinky toe, so I cut it off.” I said, “I’m sorry – you had it cut off?” He said “No, I cut it off myself, just nipped it off with a pair of pliers, wanna see?” (of course I did, I am one of those people)

So he’s showing it to me, it’s healing nicely, etc, and I say to him, well what happened? He said: “I’m diabetic, it was getting gangrenous, just wasn’t feeling it, so… also I decided to go off my heart meds, they were making me feel like crap.” So this guy, the ex-drug runner who cuts off his own toes and now lives out in a boat on the marina. He has a daughter. Guess what?  He got her vaccinated.

Man holds pliers to his toe. This is a likeness,  This toe is healthy and was left alone.

Man holds pliers to his toe. This is a likeness, not the toe or the man in the story.This toe is healthy and was left alone.

End-of-Year Donations Help World’s Poor Get Basic Health

Patient POV tends to take up issues concerning American healthcare policy and patients in the United States. But we’ve just had a national election and the American public clearly rejected steps backward in healthcare.

Considering that this is the holiday season, which means giving for so many people, I’d like to suggest that readers think about giving donations that improve access to healthcare, provide essential health medicines, better sanitation, and housing. There are nonprofits worldwide and in the United States that know how to use these donations, with little overhead. You can check with Charity Navigator to see honorable charities that will use your funds well.

Through  #sandy and other recent disasters (Hurricane Katrina, recent tsunamis in Sri Lanka and Japan, and the earthquake in Haiti), I learned that personalized donations, e.g. used clothing, although well-intended, often are not useful or appreciated. For example, recently, in Staten Island, affected by Hurricane Sandy, bags of used clothing sat for weeks at a high school. People in need do not necessarily need or want old clothes and can understandably feel humiliated by such donations. People working day to day on the ground in impoverished areas know  what is needed most. The best way to contribute is via a dollar donation that charities can decide how to use. Charity Navigator has several tips on making donations that count.

Noncommunicable diseases, women’s health, and vaccines concern me most, but the health care needs are vast.





Underused, Shingles Vaccine Beset with Problems

Shingles on the waist, above the eye, and forehead, CDC.

If you talk with people who have had shingles, many will tell you that it took a terrible toll on them and that they wish that they could forget about the entire experience. Some can’t. “Freddy” had shingles three years ago, when he was 61. A decorated Vietnam veteran, he told me that nothing prepared him for the incredible pain, headaches, fever, nausea, and numbness that he had from shingles. Freddy had a painful rash on his left side and fluid filled blisters. His entire left side was affected and he says that he still has numbness. He went to work, but was miserable, and immediately went to bed when he got home. His doctor told him that his symptoms were “classic” signs and symptoms.

In 2006, the shingles vaccine was approved and recommended for people age 60 whose immune system was good. However, the uptake for the vaccine is just 10 percent. If this was the case with uptake of childhood vaccines, people would be in an uproar.

Shingles is caused by the same virus that causes chicken pox, the varicella- or herpes-zoster virus. Once you have chicken pox, the virus remains in your body in a dormant state for the rest of your life. The risk for shingles rises with age.

  • The Shingles Prevention Study found that the vaccine reduced the odds of getting shingles and postherpetic neuralgia (pain along a nerve three months after symptoms begin) by 51 percent;
  • The shingles vaccine is covered under Medicare Part D; however copays vary widely, depending on your plan;
  • About one in three individuals will get shingles in their lifetime;
  • Those individuals who get vaccinated and get shingles will have a less severe case, have decreased likelihood of loss of work, and lower treatment costs;
  • In one study, African Americans got vaccinated less and the risk for shingles was lower; however, researchers maintain that the burden is still considerable and urge all groups to get the vaccine;
  • Because the vaccine was only licensed recently, the duration of its effectiveness remains unclear and is under study.
  • The Advisory Committee for Immunization Practices recommends that people age 60 and over get the vaccine. However, most people don’t know about it, doctors don’t recommend it, and pharmacies often don’t carry it because of storage issues. It is also one of the costliest vaccines available: costing as much as 20 times what the flu vaccine costs, and 4 times as much as the pneumonia vaccine.

Freddy says that he would have definitely gotten the vaccine, but he knew nothing about it. That says something: Freddy works as an analyst for a health agency in the mid-Atlantic.

“This vaccine is a perfect storm,” says Rafael Harpaz, MD, MPH, epidemiologist with the Centers for Disease Control and Prevention, Immunization Services, National Center for Immunization and Respiratory Diseases, Atlanta GA. “It is one of the most expensive vaccines, there are big supply shortages, the manufacturer [Merck] does not promote it, and doctors don’t tell patients about it because it is difficult to get. Added to that are reimbursement issues: it may be unaffordable or require cumbersome paperwork for people to get their money back.”

In New York, one patient told me that she went to several chain drugstores: all told her that they never carry it and her doctor had no idea where to find the vaccine. Finally, a pharmacist at an independent pharmacy told her that the vaccine was on order and that they would have it in four months. That was not all. She’d get a prescription from her doctor, have to pick up the vaccine dose, and have the doctor give her the shot. The pharmacy warned her to check with her health plan on the cost so that she would be sure that she wanted it. She gave up.

Harpaz pointed out that adult vaccines are “an extremely tough sell.” It took decades to get the pneumonia vaccine up front and it took doctors demonstrating that preventing pneumonia was cost effective and pushing it aggressively as a way to stop unnecessary hospitalizations. The pneumonia vaccine is part of Medicare Part B.

Shingles vaccines may not be promoted very much unless more data comes out that demonstrates adverse effects on employee work performance (days out of work, in pain, and discomfort) or high treatment costs linked for people who don’t get vaccinated.

The shingles vaccine is covered under Medicare Part D, but that doesn’t mean it is affordable. Out of pocket expenses for the vaccine are all over the map, very much dependent on who negotiates what contracts with whom.  The Government Accounting Office is exploring ways to make these vaccines more accessible and simplifying payment and reimbursement.