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Lyme Legislative Forum Survey Comments

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Lyme Legislative Forum Survey Comments Lyme Legislative Forum Survey Comments Presentation Transcript

  • IN THEIR OWN WORDS WHAT LYME PATIENTS WANT
  • A sample of the range and variety of comments submitted to the Legislative Forum
  • Treatment Flexibility Support for Research Additional funding for research Funding to create better treatments and therapies a better blood test Education all health care workers including the states health department workers
    • The Government needs to get the CDC to allow all bands showing positive on the current blood tests to be reported to the family doctors
    • Revise the current measures of the CDC for reporting occurrence
    • Need funding for research for an accurate diagnostic test
    • Insurance companies must not be able to deny IV antibiotics using the old ISDA guidelines
    • Protection for physicians who treat those with Lyme
    • Better diagnostic tests by requiring higher sensitivity, reproducibility, etc than test kits currently being approved by the FDA
    • Clearly we need coverage of extended antibiotic treatment by insurance companies
    • Impressing upon the need for disallowing insurance companies to use the IDSA as the sole criteria for covering as well as for denying Tick Illness related treatment
    • The recognition that there is more than theIDSA "standard of care", and that treating physicians have the best insight to what each patient requires
    • Greater oversight into insurance denial practice
    • Greater oversight into state's attorney general's process for external appeals and insurance company accountability
    • No one seems to be answering to anyone else!
    • Allowing Doctors the freedom to treat with long term antibiotics if that is what the Doctor and patient believe is the appropriate choice in that circumstance without fear of reprisal
    • Educate health personnel(including Medicaid), insurance companies, and the public about Lyme disease
    • Freedom of choice in treatment options including long-term antibiotic therapy
    • Treatment options that need to be covered by health
    • Insurance
    • The condoning of the IDSA guidelines alone remove recourse options for patients
    • Infusion of research $$ into treatment/cure/prevention of lyme and related infections, the immune impact, and impact on all organs 
    • Education of Medical Professionals through Depts of Health and Govt entities
    • Development of a medical "specialty" group perhaps focused on "chronic illness" that crosses the specialties of infectious disease
    • Adequate treatment for veteran and active duty members at VA/Military Treatment Facilities across the US and abroad.
    • Also, education of more doctors, civilian, VA and Military on proper diagnosis and treatment of Lyme and it's co infections
    • Congressional policymakers should begin a thorough collection of data across the United States from all avenues of health care organizations, i.e., hospitals, clinics, private practices, etc. 
    • Acceptance for disability.
    • Treatment protocol should be at the discretion of the Lyme Doctor
    • Education of the public and especially the medical community.  Many doctors remain poorly informed on the disease
    • Many news and magazine articles are spreading the wrong information. 
    • Research money, competent researchers not connected to the pharma industry, research for a reliable Lyme test, as well as reliable tests for co-infections.
    • Education-state, local and county levels should be required (e.g. warnings at the entrances to various parks)
    • Protecting physicians right to treat (decisions on treatment made between doctor and patient)
    • Recognition of ILADS guidelines (and protection of those guidelines)
    • Insurance coverage mandatory
    • Unfair persecution of LLMD's who treat chronic Lyme
    • Developing a test for tick-borne diseases that eliminates the need for clinical diagnosis
    • Funding of studies for chronic tick-borne diseases
    • Research on Neuroborreliosis diagnosis and treatment
    • Standardization of state medical boards--i.e. how members are chosen, the breadth of their powers
    • Refine and more clearly define CDC guidelines on Igenex testing and what constitutes chronic tick-borne disease
    •   Educate the public on tick borne diseases
    • Develop a viable birth control method that can be utilized in deer populations
    • Prosecution of doctors that had conflicts of interest in infectious disease recommendations
    • Overturn the ability to copyright, trademark or otherwise limit research and/or cures from bacteria that is discovered
    • Require insurance companies to pay for chronic Lyme or other tick-borne diseases
    • Require insurance companies to not use tick borne diseases as a pre-existing condition they can deny coverage for
    • Clean up the blood supply by eliminating babesia and other bacteria
    • Limit insurance company lobbying and impact on elected officials
    • Incentive/research programs on new antibiotics
    • Launch a country wide survey on where Lyme and other tick borne diseases are found in local ticks
    • Funding to investigate how to control the ticks, the spread of disease
    • Recognition that chronic Lyme Disease is actually a chronic illness.
    • Address the financial and legal conflict of interests in the IDSA treatment guidelines through legislation and not just through a voluntary agreement with the CT AG.
    • Get health care providers to pay for treatment beyond 2-4 weeks of antibiotics
    • Remove the stigma that LD invokes
    • Medical doctors should not be afraid to treat chronic Lyme disease.
    • Insurance companies should be required to pay for long-term treatment of chronic Lyme disease
    • Address the political climate that surrounds the chronic Lyme disease issue
    • I want doctors (any M.D. or general practitioner) to learn the REAL facts of this disease, including acknowledging Chronic Lyme, and be willing to treat, according to ILADS guidelines or proven methods of killing the bacteria, until the patient is symptom-free 
    • I want all doctors to do Lyme testing through a Lyme Literate lab such as Igenex and not LabCorp
    • I want doctors who DO RECOGNIZE AND PROPERLY TREAT this disease to continue to practice without threats of investigation or lawsuits
    • THE STANDARD OF CARE NEEDS TO BE CHANGED 
    • I want access to medication, health care and proper benefits 
    • I want insurance companies to cover Lyme disease treatment. My fellow Lyme patients have insurance that is mostly useless against treating persistent Lyme disease. 
    • I want to be able to walk into the E.R. when I am having a flare-up or need pain management, and the doctors and nurses know what my Lyme-literate
    • Medical Doctor knows about how to treat and manage chronic Lyme disease!  I want to be covered for this visit
    • Bottom line - I want recognition by EVERYONE, research, accessible treatment and health care 
    • Access to Lyme literate medical doctors.
    • Educating your primary care doctor's on how to treat or how to work with Lyme literate medical doctors.
    • Encouraging more doctors to become Lyme
    •   literate.
    • Education in general, on what to do if you are bitten by a tick
    • Access to medications, supplements, IV supplies.
    • Worker's comp if you got bit on the job and Help getting approved
    • Appropriate treatment for Veterans
    • Scheduling our LYME DISEASE BILLS to be discussed, noted & approved by senate, house, and signed into action by Pres. Obama
    • Lyme/co-infection patients should be treated equally as AIDS/HIV/CANCER patients... NO exceptions
    • Diagnosis and treatment. Doctors need to be able to diagnose long term Lyme Disease through testing and/or clinical evaluation so the CDC needs to update their guidelines
    • Chronic Lyme needs to be accepted and longer term antibiotics should be allowed
    • Inconsistent laboratory testing between different labs. Most labs do not even do a CD57
    • The Public Law 107-116 signed by President Bush on 1/10/02 Departments of Labor, Health and Human Services, and Education and Related agencies Appropriations Act 2002 Has not been enforced
    • Stop using the CDC surveillance guidelines as a diagnostic tool by laboratories so that chronic Lyme will be reported as positive test results.
    • Protect Lyme literate physicians from law suits jeopardizing their medical license when they treat Lyme patients
    • Physicians and pediatricians who deny there is Chronic Lyme Disease should be accountable when they consistently tell their patients they do not have Lyme Disease when in fact the lab results support it
    • Disable all insurance companies’ ability to deny therapy and treatment especially after it has been received
    • Thousands of Americans died from AIDS before the CDC, Infectious Disease Society, and the
    • American Government recognized it as a disease. How can they let this happen again?
    • Make the individual state health departments let the public know the epidemic levels and teach prevention. Currently the
    • Additional funding for those who become disabled, lose their jobs or cannot afford the medication
    • Need to get medical people working together for the benefits of the patient. Not for the benefit of insurance companies or themselves
    • Stop allowing physicians to be brought in front of state boards for healing people.
    • Allow patient to claim supplements, vitamins, and herbs as tax deductible and to buy from Health Savings accounts More funding for research
    • Somehow attempt to place the burden on the IDSA to  support their standard practices
    • Require laboratories to report the inaccuracy  of Lyme tests to doctors with each report
    • Need more accurate testing
    • Lyme awareness and acknowledgement.  Chronic Lyme is a chronic infection.
    • We need to address better patient care.
    • Total Responses: 30
    • What do you think Congress should do about Lyme and Tick-Bo Additional funding. Set up a group to manage these funds and make sure they are being spent appropriately. Work with the Lyme Disease Association. They already have research under way
    • Fund and/or support research into the still unanswered questions:
      • which persons need longer and/or more aggressive treatments and why;
      • which protocols are the most efficacious for which subset of patients;
      • why some drugs work well for a number of patients while leaving others to the ravages of ongoing suffering
    • Have a shared clearinghouse or source of information bank--comprised of data collected on patients’ symptoms, treatment and response. This can of course be blinded of personal identifiers.
    • Enact and enforce insurance oversight and accountability
    • Ditto for recognizing and accepting a standard of care that goes beyond the 28-day rule
    • Enact and enforce education within the medical community, within local Health Depts. and within school personnel and districts
    • Enhance the public health aspect by dissemination of valid current unbiased information
    • Encourage Universities to undertake this research and/or data collection and analysis
      • all around the country and even the world there are graduate students hungry for a research project lurking the halls hoping to stumble upon or be handed a topic for their research grants and studies
      • why not start publicizing the need and supporting the efforts to make Lyme and related vector borne illnesses the topics?? and bolster the support with money/grants??
    • More public and doctor awareness
    • More funding into better testing.
    • More funding into research on efficacy of long term treatment including sero-negative research
    • More funding into research on variants and co infections
    • Set policies in place that make long term treatment appropriate
    • Open up the door for physicians who want to learn, to do so without the threat of sanctions breathing down their back. 
    • Protect our doctors, and ensure that adequate treatment can be received by all
    • Appropriate more funding and get rid of faulty IDSA Guidelines
    • More acceptance and education of chronic issues
    • We need more money for research
    • We need a full investigation
    • We need a better test for Lyme
    • Research money needs to be legislated for the reliable test
    • Pass legislation on prevention, fund research (other than IDSA) and documentation of cases, change CDC policy of excluding reportable cases
    • Mandate insurance companies cover all treatment
    • Funding for un-biased research into the borrelia organism and it's numerous forms, as well as treatments for each of the forms, which is not and should not be limited to antibiotics
    • Recognize it as a legitimate chronic illness
    • Fund research that will aid public understanding of CLD and co infections
    • Pass legislation that would force health care providers to cover CLD treatment
    • Legislate research for long time chronic Lyme disease.
    • PLEASE HAVE THOSE OF US WHO BEEN SICK FOR YEARS TO BE REPRESENTED ON ANY COMMITTEE, PANEL THAT IS A GOVERNMENTAL ENTITY
    • Put laws in place to protect the few practitioners who are willing to treat us properly
    • Make disability for PEOPLE WHO ARE ACTUALLY SICK more accessible
    • I want the I.D.S.A. guidelines and the CDC surveillance criteria to be changed according to actual fact - by listening to the Lyme literate physicians who actually treat the disease, the patients themselves, and the REAL researchers.
    • I want the real symptoms of disseminated and chronic
    • Lyme disease to be understandable and recognizable by the general public
    • Pass laws protecting doctors that treat Lyme disease.
    • Give money to fund research
    • Promote education about Lyme disease
    • Educate all MDs on the disease as much as possible and further research is absolutely necessary
    • Congress needs to insure that Lyme Disease guidelines are created with the help of non-biased doctors. The present panel should be replaced and a new one sought
    • They need to allocate money for research
    • Investigate the current CDC guidelines
    • They have to stop listening to lobbyists for insurance companies, the CDC, the Infectious Disease Society and start recognizing the severity of this epidemic
    • Doctors who do treat Lyme disease for an extended amount of time need protection from losing their licenses
    • Make IDSA guideline authors prove beyond any doubt that research proves that everyone is cured on a short course of antibiotics and as they cannot, dismiss the current guidelines as unfit for purpose. We need doctors who are educated in the treatment of this disease
    • Educating your primary’s on how to treat or how to work with your LLMD
    • Access to meds, supps, IV supplies
    • Creating a DEFINITE LYME BLOOD TEST showing 100% accuracy!!
    • A cure
    • Household help those of us disabled
    • Help with getting disability
    • Worker’s comp if you got bit on the job?
    • Appropriate treatment for Veterans
    • Educating ALL DRS. and their nurses about Lyme/co-infections