PA – House and Human Services Committee

 

 
www.LymeDiseaseAssociation.org
Mr. Chairman, committee members:
Thank you for inviting me to testify favorably today on HB 798.
  
  • setting guidelines for quality assurance, or providing standards for reimbursement.

  • Yet, doctors are inappropriately using CDC surveillance criteria to diagnose, and insurance companies are using the criteria to deny reimbursement, thus patients are not getting diagnosed and treated.

    Further clouding the diagnostic and treatment picture are the draconian Infectious Diseases Society of America (IDSA) 2006 treatment guidelines for Lyme, which recommend

    against any long-term treatment for people who are chronically ill with Lyme,

    against entire classes of antibiotics,

    against alternative treatments,

    against some supplements and

    To date, almost 28,000 people have signed an LDA petition opposing the IDSA treatment guidelines on humanitarian grounds. (see www.LymeDiseaseAssociation.org)

    [6]

    [11] and even acne. It appears that with little outcry, animals can be fattened with antibiotics, health care workers can practice shoddy hygiene leading to resistant strains, acne sufferers can get years of treatment, but terribly sick Lyme disease patients are singled out to be left without treatment because of undocumented accusations of resistance.

    In closing, note that this legislation is about safeguarding the right of seriously ill patients to obtain treatment under one of the standards of care. Moreover, a significant body of evidence supports the persistence of the Lyme bacteria after short-term treatment and the efficacy of longer-term treatment approaches. Significantly, the Columbia University NIH-funded long term treatment study, currently in press in the journal, Neurology, found improvement in patients on longer-term therapy. (Other studies in attached table, pp.4, 5).

    2 CDC website

    3 Expert Review of Anti-infective therapy 2(1) Suppl. 2004

    4 http://www.guideline.gov/

    5 L Johnson, JD, MBA et al The Treatment of Lyme Disease: A Medico-Legal Assessment Ex. Rev. Anti-infect. ther. 2(4) 2004

    10 http://www.ucsusa.org/food_and_environment/antibiotics_and_food/myths-and-realities

    Lyme Disease Treatment Studies Table

    Controlled studies of Persistent Lyme Disease

    Study

    Treatment

    Results

    Comments

    Cameron

    (2005) [1]

    3 months treatment with amoxicillin

    Treatment effective for 2/3 of patients with the worst quality of life as measured by SF-36

    Results presented at ILADS 2005 Annual Conference.

    Fallon
    (2004) [2]

    10 weeks of IV Ceftriaxone

    Cognitive improvement

    Krupp
    (2003)[3]

    4 weeks of IV ceftriaxone

    64% showed improvement on fatigue

    No improvement on cognition

    Klempner
    (2001) [4]

    4 weeks IV ceftriaxone then 2 months of oral doxycycline

    No improvement on SF-36.

    Non-Controlled Studies Supporting Longer Treatment Approaches or Retreatment

    Study

    Comments

    Donta
    (1997) [8]

    277 patients with chronic Lyme treated for between 1 and 11 months: 20% were cured, 70% improved and 10% had treatment failure.

    Oksi
    (1998) [9]

    Fallon
    (1999) [11]

    References