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Committee for the Cure

Create the Climate for the Cure

It is suggested that a cure will not come about overnight, and that in order to increase the chances that funds will be available and the effort to find a cure will be expended, enough of the public must be concerned about Lyme disease and educated as to the seriousness of this epidemic that a cure will be massively called for nationwide.

In order for this to happen, the Cure Committee must focus a significant portion of their effort toward advocacy to "Create the Climate for the Cure," through the suggestions which follow:

1. Work to massively educate the public in your local area on public funds.



1. Go to your local library and determine what resources are available on Lyme Borreliosis: Books, References, Videos, Pamphlets. Bulletin Boards for meeting announcements, listing of support groups for various diseases.



2. Offer support group information to reference desk, offer to prepare a pamphlet file for them to keep in reference area. Xerox information, include brochures from National organizations, lists of websites, Art Doherty's references.



3. Request that they order Lyme Borreliosis Books and Videos, offer video ordering information for Lyme Disease Foundation and for Lyme Disease Association.



4. Determine where the local public television and cable stations are. Solicit them to do programs on Lyme Borreliosis and offer to cooperate, to round up willing volunteers to contribute, be interviewed, etc.



5. Determine if the library keeps a list or "speaker's bureau" and include yourself or others in that list.



6. Offer to supply and restock Lyme Borreliosis pamphlets in your library and municipal building.



2. Work to articulate an accurate portrayal of the numbers and severity of these diseases.



1. Determine what the Lyme Borreliosis, Erlichiosis and Babesiosis reporting procedure is in your state. What Tickborne diseases are tracked? Who reports (doctor or patient)? Must doctor's name be on report?



2. Work with your state health agency to promote accurate reporting of this cluster of diseases. Remember that each state health department has at least a national CDC member affiliated with the state department.



3. Work to pressure the state health department to revise reporting procedures as needed and to solicit physicians to report without fear of reprisals.



3. Determine what the local health department in your town and in your county know about Tickborne diseases. What are they doing about them? What information do they make available to the public on them?



1. Solicit your county government to appropriate funds for education purposes on the subject of Tickborne Diseases. Whenever possible look for ways to utilize public funds already in existence to educate on Lyme disease.



4. Determine how seriously your state is taking the threat of Tickborne diseases. Are they considered in the same league with West Nile Virus?



1. New Jersey has had very few deaths from West Nile Virus, yet there is information on the State Homepage about this Virus, and links for public education. Generate some attention about the need for your state to educate the public on the Tickborne diseases and link their websites to important Lyme disease websites.



5. Work to change CDC criteria for considerations of Lyme disease.



6. Work to educate your state and national legislators on Lyme Borreliosis and Tickborne disease issues.




Send educational materials on Tickborne diseases to your legislators and outline your concerns and your support group‘s concerns. Make legislators aware that there is a concerted effort toward advocacy by Lyme disease patients. From time to time, copy these legislators on news, published material related to Lyme disease, and repeat the needs for action on their part.

7. Locate members of the National Public Health Nurses' Association in your area or state who might be educated in the Curriculum of Lyme disease presented at Bard Conference exhibit. Ascertain whether they would make themselves available as speakers, or for advocacy efforts. Can funds be located to put this nurse on the road, i.e., speaking at Board of Eds, County meetings, etc., whether County funds for education/outreach can be used.



8. Work for National attention/recognition for knowledge, severity and numbers of these diseases to be articulated.




Only when an accurate portrayal of the extent of the devastation of this disease on the population has been articulated, will there be resources and efforts devoted toward finding a cure.

9. Determine what services are available for Lyme disease and Tickborne disease patients in your area.




Lyme disease patients are currently under-served by public programs. In the AIDS movement, utilization and expansion of public programs for AIDS patients had double value, first in benefiting the patients and extending their lives and health and second in the costs of service providing an incentive for better treatment and cure-seeking efforts encouraged by Government officials concerned with costs to taxpayers.

Special Transportation, Senior type bussing, for shopping and medical appointments, adaptive equipment, Meals on Wheels, Visiting nurses services, and other programs should be utilized for Lyme disease patients. Determine the procedure for obtaining county services for patients, i.e., Welfare, social services, employment services and retraining education, for disabled; supplemental food programs (WIC type vouchers and senior type distributions). What food banks are available in your area, what free clinics. What legal counseling pro bono.

10. Work to end the Isolation of your physician. Share materials, especially online publications, papers, etc. Most physicians are not computer literate. Conduct a Survey of Treating physicians concerning what works–anonymous.



11. Pattern after the AIDS movement and look to prolong life and focus on quality of life issues until Cure found.



12. Take a look at similarities of different diseases and ask for investigation of similarities in manifestations, treatments. This may legitimize Lyme Borreliosis.



13. Private for-profit efforts should be encouraged privately. If this is your pet project, work along with these companies and encourage investigation.



14. Make periodic press releases on a particular topic to the press. Synchronize the topics nationally. Develop a relationship with a reporter for a large paper. Solicit the help of the Media Committee in providing periodic stories for Media representatives.



15. Make Borreliosis "more preferable" as a charity. Raise consciousness, educate public. Create funds from well people. Use fundraising events to educate. A captive audience AND the chance to write the story YOUR way.



16. Fund and write, produce an educational video of the impacts of Lyme Borreliosis and other Tickborne diseases on people's lives, the impact of loss of doctors, the impact on families that lose someone if people will speak candidly. Perhaps one could use doctors in shadows to testify as to their experience. It would be desirable to fund a small competition for best video, and have videos prepared by groups around the country.

NOTICE: The information provided here is for informational, educational and entertainment purposes only. It is NOT intended to replace, and should not be interpreted or relied upon as medical or professional advice. We are victims of tick borne illnesses, and any advice from those in the medical profession are given as advice from their perspectives as patients themselves, and/or from treating a large number of patients, but NOT as medical advice. Your reading and/or using any information from this site means that you agree to the terms and conditions detailed in this disclaimer.