Letter to Institute of Medicine
Committee on Lyme Disease and Other Tick-borne Diseases: The State of the Science
Listening Session for the Native American Tribes of Oklahoma
June 25, 2010- The results of the NIH/IOM efforts designed to satisfy requirements set forth in the recently passed Congressional bills are crucial to addressing patients’ current health concerns and the future direction of Lyme and TBD research. To date the process appears to be lacking substantially in several critical areas, some that have been questioned during the course of the proceedings, without adequate responses. It appears the trend is continuing and more concerns are coming to light.
For example, during the recent IOM session, “Listening Session for the Native American Tribes of Oklahoma”, participants discovered the session included no Native American speakers from Oklahoma (or elsewhere) to address Lyme and tick borne disease concerns in the State or specified population. The only “listening” (outside the IOM staff dealing with organizational concerns) was when phones were opened to allow questions, which came from less than 10 participants, none of whom shared knowledge directly related to Lyme and TBD’s in Native Americans from Oklahoma. A comment by a panel member like-wise failed to address the issue when, in response to a caller, he advised the audience that no suitable Rocky Mountain Spotted Fever (RMSF) test for on-site use has been developed.
This brings up the question, why was the Lyme Disease and Other Tick-borne Diseases: State of the Art “Listening Session for the Native American Tribes of Oklahoma” topic chosen when there has only been one or two cases of Lyme disease reported (per year) for the past 3 years in Oklahoma?
If the focus was designed to address other tick borne diseases, such as Rocky Mountain Spotted Fever (RMSF) in Native Americans in Oklahoma, the IOM’s choice still missed the mark. In 2008, according to a report by the Oklahoma State Department of Health, there were more reported cases of RMSF in the Native Hawaiian/Pacific Islander population (55.77 per 100,000), whose members represent 0.1% of the population. Less than ½ of that incident rate was reported for Native American/Alaska Native populations, which compromise 8.0% of the total population.
The specific location (Oklahoma) and population (Native Americans) chosen for this session are obviously not a high priority when one is attempting to seriously address the escalating Lyme and tick borne disease epidemic, such is found in the north-east and elsewhere. If minorities were the only focus of the session, a more appropriate venue, such as the Cherokee Nation in North Carolina, where many Native Americans and their families (1.3% of total population) reside and work, would have been more appropriate. The NC location, bordering a national park which boasts an abundance of various species of flora and fauna, would have been a better choice. Additionally, North Carolina, compared to Oklahoma, has a significantly higher rate of Lyme and TBD’s in general and assistance is needed to address emerging tick borne diseases like STARI.
When IOM organizers were questioned concerning the listening session’s choice of topics and lack of Native American participants with knowledge of tick borne disease in Oklahoma, the response from Ms. Coussens (the IOM representative) was that she tried to reach out to Native Americans, not just in Oklahoma, but in other areas; however, she stated there were a number of challenges- including the fact that tribal members have no access to computers, therefore, could not register to be on the call. If this were the case, were Oklahoma’s Native Americans even informed of the upcoming Listening Session?
The IOM’s response, direction, choice of topic and lack of preparation greatly concerns members of the Lyme community. Had this program been taken seriously and had research be done prior to the session, organizers would have discovered that most Native Americans are quite sophisticated and many no longer live in teepees or wear deer-skin loin cloths while cooking their foraged meals over open fires. In fact, many have access to running water, electricity, televisions, fax machines, phones, radios and computers in their businesses and personal lives.
Additionally, health care professionals serving Native Americans, such as those at W. W. Hastings Hospital in Tahlequah, OK, could have been approached prior to the session for their input. With more than 650 employees, the hospital, which has the largest percentage of patients coming to them from the Cherokee tribe (75%) and other federally recognized tribes, including, Creek (8%), Choctaw (7%) and 10% from all other tribes, certainly had someone who had access to a computer or phone. The hospital, after all, offers a variety of modern services that use modern technologies, including: internal medicine, emergency medicine, urgent care, radiology, ultrasound, computerized tomography, general surgery, orthopedics, dental, ophthalmology, pediatrics, audiology, Obstetrics/Gynecology, physical therapy and podiatry, as well as having specialty clinics in diabetes management, pediatric neurology, adult and pediatric cardiology, cleft palate, and ear, nose and throat.
The NIH/IOM’s targeted audience for this session resides in or near an area that is home to a number of colleges, trade schools and over 100 elementary and secondary schools. Businesses in the region include the Cherokee Nation (1,600 employees), W.W. Hastings Hospital (650), Wal-Mart (500), Northeastern State University (1,000), Tahlequah City Hospital (350), Greenleaf Nursery (650), Tahlequah Public Schools (425), Housing Authority - Cherokee Nation (300), Lifeline Communication (300), Dollar Rent-A- Car (250) and Tri-B Nursery (200). Certainly one of more than 5,000 people from this list had computer access while at work, if not at home?
Conclusion- The unproductive and fatally flawed “listening session” was not only an insult to educated Lyme patients and health care professionals, it was not in compliance with the directives set forth in the Congressional bill’s wording or intent. Additionally, comments made by organizers were of a personal nature and an insult to Native Americans.
The listening session lasted approximately 40 minutes, which included time to inform listeners of the purpose of the session, the history of the IOM’s involvement with this type of program and the time it took to wrap up the session. Further, it served as no more than a sounding board (not an educational listening session) for a few patients concerned with the IOM’s intentions (a critical point) and their comments on tick borne disease related topics, none of which were directly associated with concerns of Native Americans with Lyme and TBD’s in Oklahoma. This situation needs to be addressed immediately. Our lives and those of our children are at stake.
Lucy Barnes- Native American, Cherokee Nation, NC
References:
*http://www.lymediseaseassociation.org/CDCCases2008.pdf
*http://www.ok.gov/health/documents/Rocky%20Mountain%20Spotted%20Fever%20-%201996-2007.pdf