From Lyme-info (If I cannot post this, tell me and I will take it down. I do not have a link. It came directly via email)
January 13, 2008
A special thanks goes out to Suzanne Maschmeyer for speaking in
Harrisburg last Tuesday and now taking the time to fill us all in on
what happened. If you have any questions regarding this hearing, please feel free to contact Suzanne directly.
I spoke to Dr. Rankin's office and they assured me that letters from PA residents AND Lyme patients who reside in another state but are or have been treated in PA will be considered valid. Please take the time to write a few lines.
Keep the faith; remember that 2008 is a brand new year and good things
can prevail.
My God Bless You,
Linda Wales
Co-leader, NYPenn Lyme Disease Support GroupCo-director, LDA - Corning/Finger Lakes Area Chapter
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PA Lyme Disease Task Force Public Hearing
January 8, 2008, 1-4 p.m.
Keystone Building, Hearing Room 1
Harrisburg, PA
Report of:
Suzanne Maschmeyer, NYPENN Lyme Disease Support Group,
P. O. Box 218, Corning, NY 14830, 607-329-1849, roots@stny.rr. com
January 13, 2008
The meeting was presided over by Dr. Stephen Ostroff, Director, Bureau
of Epidemiology, PA Dept. of Health. Other members included Dr. James
Rankin, Director, PA Dept of Health; Dr. Stan Reynolds, Director of
Microbiology; Donna Flickering (?) of the PA Dept. of insurance consumer
advocacy; Gail Sheffer, leader, York, PA Lyme Disease Support Group; and
individuals concerned with environment and fish and game in the PA
government. Legislative aides including Marilyn Weaver, an aide to
Merle Phillips, were also in attendance. About ten people were in the
audience including those scheduled to testify: Dr. Daniel Cameron,
President, International Lyme and Associated Diseases Society (ILADS);
Suzanne Maschmeyer, co-leader, NYPENN Lyme Disease Support Group that
meets in Millerton, PA and Corning, NY; Doug Fearn from the Southeast PA Lyme Disease Association; Lynn and Ken Moffett from the Gettysburg Lyme Disease Support Group, Gail Sheffer, and Heidi Healy, a resident and Lyme patient from Bethlehem, PA. The entire proceedings were recorded by an individual operating a court reporting machine.
Dr. Ostroff said that the Task Force was put together in the beginning
of 2007 with the mandate that it look at the components of the PA
government and come up with policy recommendations with regard to Lyme
disease. At a May 2007 meeting members recognized that it was very
important to get feedback from stakeholders among the populace. A
previous meeting in Nov. (?) included testimony by ILADS and IDSA members.
At the January 8 meeting Dr. Cameron explained testimony that he had
made to the task force previously regarding the cost of treating early
Lyme disease ($1,000/yr) vs. treating late Lyme disease ($16,000). He
stated that the source of this information was from an article in the
CDC’s journal, Emerging Infectious Diseases. Costs included direct
medical costs and indirect costs such as those covering travel, child
care, and over-the-counter medications. Dr. Cameron also spoke of a
journal article he authored titled Consequences of Delayed Treatment in
Lyme Disease that was published in the Journal of Evaluation ?? His
study involved 100 consecutive cases of Lyme disease in his own
practice. To be included in the study, patients had to have at least 5 bands on the Western Blot test. The major conclusion of this study was that treatment delay correlates with treatment failure. In answer to a question, Dr. Cameron indicated that treatment delay was defined in this study as a delay of at least 30 days. Dr. Ostroff asked about the cost of treating other infectious diseases. Dr. Cameron’s only information on this was that fibromyalgia syndrome (FMS) costs $7,000/yr. to treat. Dr. Ostroff indicated that the testimony made a good case for prevention efforts in Lyme disease.
My testimony included information on the experiences of more than 35
area individuals, most of whom had significantly delayed treatment.
These individuals had seen up to 30 different physicians prior to a
diagnosis of Lyme disease and had to travel three hours or more in order to receive diagnosis and treatment. Prior misdiagnosis and treatment generally had little, if any, positive effects, and some, such as steroid treatment, were detrimental. I described these as cases of mistreatment and medical neglect, the remedy for which is probably not punitive but educational and political. The testimony ended with recommendations for intensive, extensive prevention efforts; education of physicians and other health care providers, insurance reform to cover costs of diagnosis and treatment; and support for national and state funding for Lyme research.
Dr. Ostroff commented that the task force appreciated receiving specific recommendations and asked about how much emphasis to place on each one. Although those who already have Lyme must receive proper care, it seemed to me as if prevention efforts might be of prime importance. I pointed out that although implementation of the recommendations would be expensive, they would be cost effective.
Doug Fearn described the SEPALDA as a 501(c)3 organization operated
entirely by volunteers. The group’s website,
www.LymePA. org/ has hundreds of users daily and more than 5,000 people have registered at the site as Lyme patients. Monthly meetings are held and about 50 people are usually in attendance. One meeting per year is devoted to teenagers, those at highest risk to commit suicide because of difficulties with Lyme. The organization operates a hotline. The day before the hearing a person from China had contacted the group via e-mail for information.
SEPALDA did a study in 2004 in which questionnaires were mailed to all
residential addresses in Chester County, PA. There was about a 50%
response (very high for this type of research). Among those responding, one half of households included at least one individual with Lyme. In spite of the fact that Lyme is so widespread, only a few local physicians diagnosis and treat Lyme disease. The disease is seriously underreported in the county and many patients must stop treatment too early resulting in relapse.
Dr. Ostroff commented that even though Chester County is a high burden
area for Lyme, he is aware of physicians there who do not treat
individuals who present with a bullseye rash, a definitive sign of Lyme disease. He asked Mr. Fearn if he knew why there were not more
physicians there treating Lyme. Doug could only reply that skepticism
is very prevalent among physicians.
SEPALDA works closely with the county health commissioner and with the
local Game Commission, two important allies. Many residents are very
upset by multiple problems caused by deer.
Lovette and Ken Mott from the Gettysburg Lyme Disease Support group
indicated that their organization is also 501(c) 3 and that they have
tried without much success to raise funds to help people who have Lyme
disease. They also reported some of the same difficulties as others
such as lack of knowledgeable physicians, delayed diagnosis and
treatment, and misdiagnosis. Ms. Mott has appeared on Dateline and has testified before Congress. She was very frustrated by the lack of
constructive response. The Gettysburg National Park attracts more than 2 million visitors per year. The tick population is so large that local restaurant owners complain about the tourists who come into their establishments because so many ticks fall off of them. There is no public information on Lyme disease currently offered at the park. The Motts suggested that state and other parks should have information
posted, that Lyme needs to be in the curriculum for state medical
students, and that physical education and health classes should include units on Lyme disease.
A questioner from the audience asked the task force if the spray that is used to kill gypsy moths also kills ticks. It does not.
Someone from the audience commented that it is important to educate the public as well as Red Cross and other health workers about the danger of Lyme patients donating blood or organs as the disease can be transmitted in these ways.
Gail Sheffer testified from the York, PA Lyme Disease Support Group.
Her whole family has Lyme disease. The support group was formed in 2004 and has 110 members. She stated that a prevalence study of a
genetically based disease, Charcot-Marie Tooth, was being done and that it is important but difficult to sort out the Lyme cases because of similar symptoms. Previous information indicated that there are about 150,000 cases of Charcot-Marie Tooth Disease nationwide.
Gail also spoke about testing of ticks for Borrelia burgdorferi. Dr.
Richard Dryden of Washington Jefferson College does this testing. He
found an increase in one area of PA from 43% of the ticks being infected with Lyme to 67% being infected in one year. Almost half of ticks from NJ tested were also found to be infected with Lyme. Those who would like to have ticks tested my send them, preserved in alcohol, to Dr. Dryden at the college.
Someone stated that from 2004 to 2005 there was a 35% increase in the PA deer population.
Statistics presented for reported new cases of Lyme disease for 2007
were 4,666 in PA and 3,530 in NY. The CDC estimates that actual case
nos. are probably ten times as high as those reported.
A program described for keeping ticks away from people involved removal of grass and replacement with wood chips and spraying for 15ft. from the border of an area resulting in a 100% reduction in nymphal ticks from the target area.
Heidi Healy of Bethlehem, PA testified that she, her husband, three
children, and several other relatives all have Lyme disease. She
described the restrictive IDSA (Infectious Disease Society of America)
guidelines for diagnosis and treatment as an “insult.” Although her
case was reported to the state department of health her insurance
company refused to pay for some of her Lyme treatment citing “lack of
medical necessity.” A health department official arranged to give her
information about receiving documentation from the state regarding her
case.
Dr. Reynolds stated that the PA lab used to do much more of the testing for Lyme disease and informed physicians that a negative result on a test did not necessarily mean that the patient did not have Lyme disease. The department of microbiology will test specimens of skin (from a punch biopsy or skin scraping), synovial fluid, and spinal fluid for Lyme spirochetes.
A registered nurse in the audience pointed out that some individuals are treated for acne for up to 30 years yet so many physicians are reluctant to treat Lyme disease for much shorter periods of time.
Dr. Ostroff thanked participants and reminded us that written testimony will continue to be accepted by the task force through January 31. Testimony should be sent to:
Dr. James Rankin
Pennsylvania Department of Health
Room 933
7th & Forster Street
Harrisburg, PA 17120
or fax to (717) 772-6975.
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Repeating again:
Letters from PA residents AND Lyme patients who reside in another state but are or have been treated in PA will be considered valid. Please take the time to write a few lines.
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