Suffolk, NY – Town Hall Lyme Disease Meeting Coordinated by Empire State LDA
Suffolk County Legislator Lyme Seminar, August 30, 2007 Patricia V. Smith, Lyme Disease Association, Inc. www.LymeDiseaseAssociation.org
Legislator Romaine: Thank you for hosting this panel on Lyme disease, which affects over 50,000 New Yorkers annually. The LDA is a national all volunteer non-profit that has 27 allied organizations including in NY, affiliate Empire State Lyme Disease Association, Corning/FingerLakes Area Chapter, NYC Support Group, Hudson Valley LDA, Military Lyme Support on the Long Island and STOPTICKS in Dutchess as a coalition partner. The LDA’s mission is to promote education, research, prevention, and patient support.
Of special interest in NY this year is the opening of the Lyme and Other Tick Borne Diseases Research Center at Columbia University funded through efforts of the LDA and Time for Lyme (TFL), its CT affiliate (introduce Diane Blanchard). The Center, first of its kind in the world, is focusing on chronic Lyme disease research with one goal to develop a gold standard test. A recent Johns Hopkins study showed Lyme tests missed 75% of cases, yet they continue to be used diagnostically in New York, thus, people with Lyme disease may be misdiagnosed with Alzheimer’s, CF, fibromyalgia, ADD, MS, ALS, lupus, and even autism.
Chronic Lyme patients have been described as being as sick as those with congestive heart failure, and the costs to society can be staggering. According to a 1998 study in a CDC journal, early Lyme costs averaged $161 per patient and neurologic longstanding Lyme disease averaged $61,243. An actuarial study in the journal Contingencies states, “37% of the financial costs of this disease is incurred before the correct diagnosis is made.” A delay in diagnosis leads to more chronic disease since the Lyme bacterium can get into the brain within 24 hours of a tick bite.
Lyme is the most prevalent vector-borne disease in the US. From 1993 to 2005 (except 2003), NY has been number one in reported cases and three counties nationally had annual rates above 300 cases per 100,000 of population; two in NY: Columbia and Dutchess.
The CDC concludes that only 10% of cases that meet its surveillance criteria are actually reported, so 233,050 cases that fit the surveillance criteria probably occurred nationally− 55,650 of these were NY residents. Just released 2006 numbers show NY accounting for 23% of cases. The numbers do not include the cases of Lyme that are clinically diagnosed by physicians.
Lyme disease frequently strikes our children ages 5-14 according to CDC. In a CDC study in NJ of 65 children with Lyme disease in grades K-12, the median number of school days missed was 140, with median duration of home instruction, 153 days. 78% of the children experienced a fall in grade point average during the time of illness. Over 78% experienced a decrease in friends. “…often, patients spent large blocks of time as semi-invalids, isolated from social groups and missing out on cultural, sports and social activities….School performance of nearly all patients fell sometimes drastically, and in several instances, was said to interfere with selection by colleges and universities.” A study at Columbia University demonstrated a rise in IQ of 22 points in a student with Lyme disease after proper treatment.
Since that 1992 school study, case numbers have close to tripled. Now we have other emerging tick-borne diseases transmitted by deer ticks including anaplasmosis,/ehrlichiosis, babesiosis, bartonellosis, tularemia, tick paralysis. Add to that, Amblyomma americanum, the Lone star tick, which 20 years ago roamed only as far north as Central NJ, and is now found as far North as Maine. Long Island has a huge population of the lone star ticks which can carry a Lyme-like disease called STARI, Southern tick-associated rash illness. STARI looks and acts like Lyme, may have a bull’s eye rash like Lyme, is treated the same but is not detected by currently available Lyme tests. Doctors often tell patients not to worry, the tick that bit you was not a deer tick, yet the lone star carries not only STARI, but ehrlichiosis, Rocky Mountain spotted fever, tularemia, and possibly tick paralysis. The American dog tick transmits RMSF, ehrlichiosis, and tularemia.
These are some of the reasons LDA and its allied organizations have supported the development and passage of federal legislation. US House bill HR 741 (Smith/Stupak) already has 88 co sponsors including 25 out of 29 New York Congressman counting Tim Bishop from this district. It provides $100 million over 5 years for research, prevention, physician education, and formation of a federal task force and is necessary to focus attention on Lyme disease, since its funding is being vastly overshadowed by funding for other less prevalent diseases like West Nile Virus (WNV). In 2005, the government spent about $32.6 million on Lyme disease and $80.8 million on WNV, despite the fact there were 7.5 times more Lyme cases reported than WNV.
The US Senate companion bill, S 1708, was introduced in June by Senators Dodd, Schumer and Hagel. Sen. Schumer invited me to a press conference in NY last month to gain recognition for the bill as he discussed his own recent bout with Lyme disease.
The physician education component of the Federal bill is vitally important, since large numbers of doctors remain uninformed about the basics of Lyme disease, e.g., less than 50% of people who develop Lyme disease have a bull’s eye-shaped EM rash and a negative test does not rule out Lyme disease. Patients without a bull’s-eye rash or those with symptoms and negative tests are being turned away without a diagnosis or treatment.
A number of physicians are treating Lyme disease based on the Infectious Diseases Society of America (IDSA) guidelines which recommend against any long-term treatment for people who are chronically ill with Lyme, and against entire classes of antibiotics, alternative treatments, and supplements. They also recommend against individual physician discretion. Bottom line is, long suffering patients are now told they can get no treatment for their chronic Lyme disease and patients recently bitten may not be adequately treated, leading into a more chronic and disabling stage of the disease.
The IDSA guidelines ignore other standards of care which address early infection as well as more complex chronic cases− for example-the peer reviewed guidelines published by the International Lyme & Associated Diseases Society (ILADS), a professional medical and research organization. Both guidelines were accepted for publication on the National Guidelines Clearing House website, under the auspices of Health & Human Services.
In spite of the acceptance of these guidelines by the Clearing House, practicing physicians continue to be monitored by insurance companies who flag long-term treatment practices. Sometimes insurers privately indicate to the physicians they either need to curtail prescribing antibiotics for Lyme disease or need to leave the insurance plan. Some leave voluntarily in response to the pressure, others are forced out and continue treating patients without accepting insurance. Other physicians fear scrutiny from the insurance companies and have stopped treating Lyme disease entirely. The lack of insurance coverage creates a severe hardship on patients.
Last year, the Attorney General of Connecticut instituted an ongoing investigation into the IDSA guidelines development citing exclusionary conduct and commercial conflicts of interest which may violate anti trust laws.
Treating doctors feel that the Lyme bacterium which has the ability to hide inside the cells, kill cells that are supposed to kill it, and maybe even to change into other forms, may not be eradicated when treatment is restricted. Yet insurers often deny coverage based upon the CDC surveillance criteria which the CDC clearly states are for surveillance purposes only, not for diagnosing or for reimbursing.
Patients are becoming more vocal and have increasingly turned to established organizations such as the Lyme Disease Association (LDA) for help. Legislative solutions to Lyme disease problems are being sought and achieved by patients and advocates nationwide and more partnerships are being established for research. For example, and I am announcing this for the first time this evening, LDA and Time for Lyme are now partnering with NYU to open a neuromuscular center next month. Research will focus on Lyme patients who have problems with the autonomic nervous system and other neuro-muscular problems.
In closing, I want to update you on our progress with the federal government. In July 2006, LDA met with Dr. Julie Gerberding, Director, Centers for Disease Control and Prevention (CDC) in Washington, DC. 20 hours ago, I returned from a visit to the CDC’s Vector-Borne Disease Division in Ft. Collins, Colorado. They invited me to a day long series of meetings where they briefed me and had me present the issues surrounding Lyme disease to the Vector-Borne Division there at Ft. Collins where the Lyme bacteria are studied in a secure laboratory. I discussed the lack of focus on the disease and the impact on patients, how they cannot get diagnosed, treated, and reimbursed—how hospitals are not caring for patients, how pharmacists are refusing to dispense prescriptions and how mothers who seek treatment for their children are being investigated for Munchausen’s by Proxy.
I also discussed the difficulties facing treating physicians− peer, medical board, and insurer pressure not to treat and eroding clinical discretion. This was a breakthrough meeting where both sides spoke frankly and committed to continued meetings and dialogue to help bring together clinicians, researchers, government officials and patients in a united front to fight the common enemy, borrelia burgdorferi, the bacterium that causes Lyme disease. We will win.