LYME DISEASE: THE HEALTHCARE CRISIS AND THE RESTRAINT OF SCIENCE AND MEDICINE

LYME DISEASE is the fastest-growing infectious disease in America. The Center for Disease Control reported about 35,000 new cases in 2008, but estimates that the actual number of cases to be 6-12 times higher. Ticks carry the disease, which is a spirochetal bacteria like syphilis. Early signs of Lyme include fever, headache, fatigue, and an “erythema migrans” (EM) rash. Late-stage Lyme can cause “severe permanent physical complications” involving the joint, heart, eye, and nervous systems.

BIG INSURANCE COMPANIES follow guidelines created by the Infectious Disease Society of America (IDSA), which rejects doctors’ ability to use clinical diagnosis methods, and gives only a short 28-day treatment of antibiotics. (See: CT ATTORNEY GENERAL’S Announcement: http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284 ). As a result, doctors in hospitals are simply presented with the IDSA guidelines by the insurance providers, and patients often find that their insurance companies only provide short term treatment.

YET, MANY DOCTORS WHO SPECIALIZE IN LYME CARE prefer to include clinic diagnostic methods and treat their patients longer, until they get better. Many of them belong to the International Lyme and Associated Disease Society (www.ilads.org), which made its own guidelines to better recognize and provide treatment for Lyme disease.

IN 2008, CONNECTICUT’S ATTORNEY GENERAL investigated how the IDSA made its guidelines, and discovered problems like conflicts of interest with insurance companies and failure to consider a range of research. The Attorney General found grounds for an Anti-trust action. The IDSA settled by agreeing to make an independent panel to review its guidelines. (CT AG’S Announcement: http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284 ).

IN RESPONSE TO THE ATTORNEY GENERAL’S FINDINGS, THE IDSA MADE A REVIEW PANEL that was chaired by a former IDSA president, and excluded any doctors who had treated long term Lyme. In 2010, the IDSA REVIEW PANEL decided unanimously that the IDSA guidelines needed no change.  But in a complete contradiction, the same panel’s report was evenly divided about whether the IDSA guidelines’ diagnostic criteria needed to be changed. The panel had other problems, like minimal discussion of opposing points of view. (Final Panel Report:
http://www.idsociety.org/Content.aspx?id=16520.).

Consequently, the Connecticut Attorney General should enforce his settlement agreement with the IDSA, and continue to seek a review of the IDSA guidelines that actually is independent.

In the article “Connecticut’s Antitrust Action against the IDSA’s Lyme Guidelines”, attorney Hal Smith reviews: the IDSA’s restrictive diagnosis and treatment guidelines, the Attorney General’s investigation into the guidelines, and the problems with the IDSA’s supposedly “independent” review panel that re-approved them.

The article is available on:

https://docs.google.com/document/pub?id=1_Ln6NbVI50nGdJ2rt4jFQf4ITPWLmInXEaZxFtxUmxU

and

http://groups.google.com/group/coma-ct/browse_thread/thread/2324bd45d52ac8f7/273aa9fe920dce12?hl=en&lnk=gst&q=lyme#273aa9fe920dce12

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It’s HERE! National Public Health Week!

Woooo! Check out the cool events this week!

State of the Planet

On March 25: Look for a state of the union address unlike any other–State of the Planet 2010.

A biennial conference, hosted by the Earth Institute and The Economist, watch the world’s most influential and innovative thinkers tackle critical issues facing the world including: climate change, poverty, economic recovery and international systems.

Clearly all these issues greatly affect public health (a topic of  import to PHC), but this post will place focus particularly on poverty.

A short list of infectious diseases, treatable with inexpensive generic drugs, accounts for 70-90% of all childhood illness and death in the developing world — a truly appalling statistic.

These enormous global health disparities cause thousands of global citizens—sons, daughters, mothers, and fathers—to die each day from diseases for which cures were discovered decades ago. Such deaths do not come from disease as much as from complacency: killed by conditions that could be prevented with simple, affordable remedies: vaccinations, bednets, anti-malarials, hand sanitizer and antibiotics.

Disease has practically become an accepted part of life in impoverished communities, yet treatments are available for less than a cup of coffee. So what can be done?

Here is a list of some of the more innovative approaches to improve health or reduce costs for the poorest of the poor:

Selling to the poor: Social enterprises likes HealthStore Foundation attempt to use market mechanisms to create a private alternative for sustainable access to low-cost, high-quality medications.

Health Impact Fund: Yale’s own Thomas Pogge is leading the charge to radically change Pharma’s global IP policies by incentivizing R&D expenditure that would address substantial reductions in global burden of disease.

PATH‘s Malaria Vaccine Initiative: Funded by the Gates Foundation, a collaborative effort to create a whole new type of vaccine will save millions of lives.

The Power of the Text: FrontlineSMS:Medic leverages the power of the cell phone to save lives in developing countries.

charity:water: No one brings clean drinking water to people in developing nations better than CW. 100% of proceeds go to fund water projects.

Flu Tip

Some myths about the H1N1 from the guys of Mythbusters.

Innovative uses of condoms, as reported by UNFPA country officers

Note: the stories here won’t be found in official UN country reports, as they are transcribed from a night out drinking with my colleagues, but I assure you they are true…

It is UNFPA/UN Cares/UNAIDS policy to have condoms available at all office bathrooms. A friend at the office who used to work in Paupa New Guinea noticed that every time a new supply was put out, it would be gone. So she finally asked the women working in the office, “where are all the condoms going??”. She looked over to see her colleague with an opened wrapper, using the condom’s lubricant on her arm – as a moisturizer. 🙂

Similar stories began to unfold this evening, out to dinner with friends. Here’s a brief summary:

UN Papua New Guinea: women use lubricant from the condoms as moisturizer

UN Jordan: women open up condoms to store their earrings and other jewelry in transit

Thailand: male students use the lubricant covered condoms to shine their shoes for their school uniform


Vietnam: youth catwalk fashion shows w/ outfits made of condoms & pills (see photo)

Thailand National AIDS Seminar, 27-29 May 2009

Hello friends!

To continue in Javi’s footsteps, here’s an update from my summer in Bangkok, Thailand. I arrived at BKK late Friday evening and spent Saturday and Sunday exploring my neighborhood and even managed to navigate the mall to get my cell phone service set up.

Monday was my first day at the UN – I finally got to meet my preceptor, whom I’ve been corresponding with via e-mail for the past 6 months, and other friendly colleagues. I sit at a cubicle in an office with members of the UNFPA Thailand country office and the East Asia/Southeast Asia regional office. I’d say one of the most notable bits to share from here is that the food is DELICIOUS and SO inexpensive! The UN building has 2 cafeterias with international cuisine and traditional Thai dishes, and then there’s a café with sandwiches, salads, etc. I’d say I pay an average of $1-2 for my meals (good sized portions, too!)- with a drink, dessert, and after-meal coffee, I’ll probably pay max $4 in all. 🙂


Now onto the more important stuff…! Today, I was fortunate to attend the Thailand National AIDS Seminar, held at a huge convention center in Bangkok.


Photos: archway at the convention center. ‘Walking condoms’

This is the 12th annual seminar, originally started in conjunction with the US CDC, the International Epidemiological Association (IEA), and other leaders in HIV/AIDS in the Asia Pacific region, but has now grown into a large scale 3-day event, expanding beyond members of the HIV community to the general population (elementary school to college-aged students, clinicians, people living with HIV, political leaders, celebrities…. everyone, really!).

photo: Prime Minister of Thailand








The seminar is organized into plenary sessions of leaders discussing key issues in HIV (female condoms, ‘staying negative’, etc.) and a large exhibition room with over 100 booths from community based organizations and NGOs, providing blood tests, screenings, and information on counseling, medication, and prevention. Posters from recent investigations and journal publications were on display. There was also entertainment provided by local dance troupes and musicians.

The opening ceremonies featured remarks from the ministry of health, a woman living with HIV, and the prime minister of Thailand. I got a quick translation after the audience erupted in laughter when the woman living with HIV looked to the prime minister and asked “Sir, can you please be a good role model to our country and have one partner?”. Later in the opening session, the PM did respond directly to her question and said that it would be no problem to stay with only his wife.
The UNFPA had a booth next to UNAIDS, UNICEF, the World Bank, and other UN agencies. The UNFPA Youth Advisory Panel was on board to distribute information, host a quiz game with prizes, and get people to sign up for the online HIV/AIDS Solution Exchange program. There were booths sponsored by pharmaceutical companies, sex worker and MSM advocacy groups, and youth organizations. One of my favorite sites was of a traditional Thai farming basket carrying exotic fruits and… condoms! They gave them out to everyone. 🙂



Oh, another quick note… I almost forgot about my ‘encounter’ w/ swinefluness during my voyage over the pacific. It looks as though several airlines and airports have taken (in my opinion) more extreme cautions concerning H1N1. I took ANA from DC to Tokyo then Tokyo to Bangkok. All flight attendants working for ANA are required to wear facemasks at all times on board. I also noticed several passengers sporting the masks. Every passenger on the flights arriving in Japan and in Thailand is required to fill out a medical form, stating the purpose of travel, prior stays before travel to destination, and a series of yes/no questions on H1N1 symptoms. A few hours before we landed in Tokyo, an announcement was made that ‘a passenger on board has reported potential symptoms and the flight will be inspected upon arrival. Thank you for your patience with the delay…”. When our flight landed, health officials and quarantine inspectors came on board to look at the passenger ‘with symptoms’ on board, and also to test everyone who sat within 5 rows in either direction. Lucky for me, I was sitting just a few rows before the inspection zone and was able to deplane with just a 15-minute delay.

Whoops, didn’t mean to write this much! Hope everyone has had a great start to the summer!

~Lesley

Julio Frenk on Swine Flu

Catherine shared this NYT op-ed about swine flu by Julio Frenk, the former Minister for Health for Mexico (who recently spoke at Yale!):

Some have complained that the Mexican government did not act fast enough to identify this new bug and sound the alarm. But such criticism fails to take into account the real-life complexity of recognizing and responding to an unexpected public health emergency.

What do you think about Mexico’s response to swine flu? Join our “featured discussion” of the week!