Health care paradigm shift needs to happen in South Louisiana

Mary Margaret Thomas is an RN and health care specialist for the Louisiana Bucket Brigade, currently researching access to health care for toxic exposure.

On Tuesday I drove down to Raceland and Jean Lafitte, La., with Josh Pelletier and Karen Savage of the Gulf Coast Fund to join the Robert F. Kennedy Center for Justice and Human Rights Delegation. First of all, I have to say how impressed I am with this group. It’s impossible to assess and prioritize public health needs without first understanding the underlying social and political fabric of a population. South Louisiana is unlike any other place in the United States. Even though I’m from North Louisiana, my learning curve this summer has been steep to say the least. Take the unique cultural context of this area combined with the invisible relationship industry has at every echelon and consider an infrastructure scarred from the complete devastation of Hurricane Katrina. This was the context of South Louisiana, ranked happiest state in the United States, before it became cloaked in the shadow of the largest man-made environmental disaster in the country. The delegation group had to digest the complexity of the public health crisis at lightening speed, and they did it quite well.

Our first stop was to meet with community members and cleanup workers who have been ill since the BP Oil Spill. Since last fall I’ve been trying to follow from a distance the flurry of providers who infiltrated the Gulf to assist in treating patients who are experiencing a host of grave medical symptoms consistent with chemical exposure. A handful of providers from France, Brazil and all over the continental United States were offering resources on treatment and detoxification.

First we received a briefing on EPA regulations regarding hazardous waste management:

In 1976, Congress passed the Resources Conservation and Recovery Act mandating that EPA develop regulations for identifying and managing hazardous wastes. One of the documents the EPA produced in 2002 was the Exemption of Oil and Gas Exploration and Production Wastes from Federal Hazardous Waste Regulations (PDF). Under these regulations the EPA determined:

“Wastes generated during the exploration, development, and production of crude oil, natural gas, and geothermal energy are categorized by EPA as ‘special wastes’ and are exempt from federal hazardous waste regulations under Subtitle C of the Resource Conservation and Recovery Act (RCRA).”

If you want to read more: http://www.epa.gov/osw/nonhaz/industrial/special/oil/

So when the Louisiana Sweet Crude oil (the Macondo well’s PAH “footprint” for the BP oil) was combined with Corexit 9500 and 9527 and some of its individually categorized toxic chemicals including Methynol (wood alcohol) and ethylene glycol (essentially antifreeze), you have a mixture that’s considered Non-Hazardous Oil Field Waste by the EPA and the federal government. And it was entirely legal for cleanup workers to skim the toxic debris off the surface of the water into boom nets and light it on fire in a “controlled surface burn.” Keep in mind many of the clean up workers were not even wearing respirators during their exposures.

Check out an MSNBC report on this here.

Next we met some patients from towns along the Gulf Coast including Bay St. Louis, Miss., and Grand Isle, La. Names are changed for privacy, but these are some of the people who shared their stories:

Michelle is in her early 30s, with degrees in psychology and music theory. She ran a kitchen of 1,200 people on an oil rig boat, teaches singing and piano, runs an independent catering business, and makes jewelry. Michelle is the bread-winner for her immediate and extended family. Both her parents died when she was in her 20s, and she raised her younger brother as well as her sister’s daughter who has learning disabilities. A friend who’s known Michelle since she was a little girl says she’s always been bright and energetic. Today she looks exhausted. A few months ago, Michelle found herself disoriented in her car at an intersection in Houma. She didn’t know where or who she was or where she was supposed to go. Michelle also loses vision in her right eye off and on, she feels depressed and exhausted and she experiences severe abdominal cramping on a regular basis. Her throat is often irritated and sore, and it’s painful to sing when she teaches her music classes.

Pierre is in his mid-50s, and he worked on a cleanup boat after the spill. Pierre’s benzene blood levels showed his toxic load to be almost 100 times OSHA’s recommended limits (this figure was given by a third party source). Pierre finds himself frozen from time to time, unable to move or speak or think. The last time this happened he had started his truck and walked back toward his house to get something. Pierre stood frozen on his porch for four hours. He has also been hospitalized several times for seizures and also experiences severe abdominal cramps, depression and dizziness on a regular basis. Pierre looks relatively fit, and he says the seizures have only started since his exposure after the cleanup.

Joe is also in his mid-50s with a kind voice and gentle demeanor. Of all the turmoil Joe’s experienced, he is most upset about the loss of two of his dogs. One died of seizures and the other after a miscarriage, both after the spill (there are many other stories of pets experiencing seizures, tumors and death along the Gulf Coast since April 2010). Joe also finds himself stranded in this frozen stupor as well from time to time, often lying on the floor for hours without being able to move or speak.

Grant is 34 and was also a cleanup worker. He is intelligent, articulate, good looking and today, he is clearly angry. His attractive strawberry blonde girlfriend joins us, but her face is silent and solemn the entire day. Grant explains the conditions of the NIEHS Gulf study he’s involved in and how one of his blood tests will determine if his exposure is going to genetically modify his genes. If this is the case, it’s recommended that Grant not have children as they’re likely to have birth defects, learning disabilities or a combination. We also learn that these volatile solvents can pass through a male’s sperm into their sexual partners, so the cleanup workers should not be having unprotected sex until their bloodwork is clear.

This is going on all over the Gulf Coast, and cleanup workers aren’t the only ones affected. Wednesday I heard a similar account from Lori Bosarge who lives a quarter-mile from the Beach in Coden, Ala. Her symptoms post-spill are similar to these folks: hypersensitivities and new allergies, dizziness and fatigue, respiratory illness and on occasion coughing up blood with temperatures up to 103. When Laurie asked her doctor to perform blood work for volatile solvents, she was censured: “What do you think the tests are going to accomplish? Are you going to sue BP?” Laurie said that she wanted to know for her own piece of mind why she was sick and to be able to share her story with others in her community who are ill. “They’re going to think you’re crazy” was her physician’s reply. He ended up ordering the lab work from Metametrix. Laurie had toxic levels of ethylbenzene and m, p-xylene, both aromatic compounds found in crude oil. Her story is up on Youtube.

Some commonalities among the patients we met in Raceland: 1) Symptoms are temporarily relieved with Cortisone 2) They’ve developed a new propensity toward hypoglycemia (which is partially to blame for the seizures) and 3) non-compliance is a huge issue because they all have memory deficits. We discussed treatment modalities that had been researched in other clinical trials, but the truth is, the outcome of this large-scale human science experiment is yet to be determined. Read some abstracts from the CDC/ATSDR on chemical dispersant research. Note that most are only testing these chemicals on rats for one to seven days.

We don’t have 5 or 10 years to wait before the NIEHS research studies are published. So a select handful of other Gulf Coast doctors and nurses are actively researching detoxification principles and treatment modalities in an attempt to lighten the body’s toxic load rather than simply treating the overlying symptoms. The Gulf Coast is in dire need of more expertise from toxicologists and environmental health providers.

Check out this list from Rob Coulon (Coastal Heritage Society of Louisiana) of doctors who will test for volatile solvents.

I’ve found the provider and patient education resource tools from Metametrix Labs to be the most useful. They have provider referrals and great customer service as well.

Next we went with the RFK delegation to Jean Lafitte to discuss the upcoming opening of the Lafitte clinic in Jefferson Parish and talk with fishermen and community members about their health and economic situations post-spill. The RFK delegation gathered this information and presented it to approximately 38 congressional members and White House staff to determine how best to address issues of access to care along the Gulf Coast: an urgent need for provider environmental health education as well as transportation, financial resources and insurance for those who are ill. Several funding ideas were discussed, and the hope is that their visit will soon help to establish a low-cost model for a federally qualified health center. Eventually the ideal would be to have “centres of excellence” providing environmental health along the Gulf Coast with a few mobile clinics to access the more remote communities.

Again we heard stories of unprecedented disease manifestation in Lafitte — a small lesion that morphs into a flesh eating bacterial infection, a pimple-looking papule that spreads into a blotchy tingling rash all over the face, changes in vision and inner ear equilibrium. Children who have never had asthma before are suffering from acute cases, and symptoms persist for 10 months before they’re under control. Perfectly healthy people now have chronic bronchitis. Many of the dermal symptoms are being diagnosed as MRSA, and the respiratory symptoms are being diagnosed as pneumonitis, chronic bronchitis, and asthma. Patients are being treated with rounds of cortisone and antibiotics. On top of all this, many of these individuals were privately employed before the spill, and now have no medical insurance. They are either forced to treat the symptoms over the counter or are spending thousands of dollars on emergency room visits.

The Lafitte community members reiterated that physicians are hesitant to diagnose and treat symptoms they have yet to understand, so they treat as best they can based on the information they have. “First, do no harm.” — This is the medical professional’s Hippocratic Oath. This also means providers have a responsibility to be honest with their patients if they are unsure of the diagnosis and treatment, collaborate with their colleagues, research and contact outside professionals for help, and refer them as best they can. I’m not trying to diminish the exorbitant amount of work and responsibility put on these providers, but the practice paradigm needs to shift in South Louisiana. And fast. Our population depends on it.

Before leaving Lafitte, Kerry Kennedy of RFK walked up to me. She asked me to make a poster with all the signs and symptoms and researched treatments for oil spill chemicals and to post in every clinic’s waiting room along the Gulf Coast. “We have a list of all the clinics.” Her expression was calm but resolute. I said I absolutely wanted to do that and had been gathering data, but based on the information we’ve been hearing and the fact that research on Corexit exposure is new and inconclusive, I feared providers would refuse them.

But thinking harder on it, I thought of the Precautionary Principle of environmental health decision-making as a guide for action. While this rule generally applies to human or environmental harm prevention, it states that action should be taken “even if some cause and effect relationships are not fully established.” The Precautionary Principle also increases public participation in decision-making. These patients have a right to know why they are ill and to make educated decisions about treatment options. “I’ll do it” I told her, and they left for D.C.

“You should have just agreed and left it at that,” Josh said as we were walking out. I immediately felt guilty, but in reality I really just wanted her advice. I’ve also suffered chronic insomnia lately (as everyone down here has for the last year and half) trying to absorb all this information and brainstorm expedited solutions that are not only evidence-based but also cost efficient.

I feel my concept of community/public health nursing has morphed into investigative journalism this summer. In the past I’ve often preferred avoiding confrontation and trying to play peacemaker. My focus was always on helping these people and not getting into the politics. But it seems this bullwhip won’t be unfurled, so I’m calling in the reserves.

The Gulf Coast needs Environmental Medicine. They needed it long before April 20, 2010. That was and still is my focus. “I feel like I’m back at square one,” I told Josh and Karen on the ride home. “Get cozy with square one,” Josh said. “It’s two steps forward, one step back.” Next time, I’m coming back with a bullhorn, and I’m going for the nurses.

A summary of the RFK Delegation’s Findings are more eloquently summarized here.

And if you’re downright depressed after reading this, comedy usually helps, especially at the expense of BP: http://www.youtube.com/watch?v=2AAa0gd7ClM

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One Response to Health care paradigm shift needs to happen in South Louisiana

  1. Pingback: Suboxone – A New Treatment Paradigm Part Two | Dating

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