GRANT PROPOSAL (Nov. 2010): funding Diagnosis & Treatment on Martha’s Vineyard

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In 2010, Dr Enid Haller submitted the following response to a Request For Proposal (“RFP”) issued by the Martha’s Vineyard Hospital for $50,000 a year for 5 years. In the end, the funding was awarded to the Martha’s Vineyard Departments of Health under the leadership of Michael Loberg, who initially drafted the RFP for the Hospital. Prior to the conclusion of the award of the Grant, Mr Loberg offered to contribute $2,000 (of a grant he had not yet won) to Dr Enid Haller’s activities as Chairperson of the Martha’s Vineyard Lyme Support Group. As a full competitor in the grant process, Dr Haller refused this offer because it made no sense.

The Martha’s Vineyard Departments of Health have been using the grant funding for constructive purposes associated with Lyme PREVENTION; however, prevention messaging in an environment of enforced ignorance of Chronic Lyme is money wasted because with nothing significant at stake people do not pay attention to the costly and time-consuming measures that would help their families. (See “Beth Daley and the Trouble with “Prevention“) Additionally, while prevention publicity does potentially help reduce the incidence of illness (although measurement of a negative result is impossible), the continued denial of Chronic Lyme implied in the funding of prevention is tantamount to throwing the currently sick population under the bus.

Chronic Lyme produces brain-fog, anxiety and depression. The denial of Chronic Lyme in the mainstream is further crazy-making behavior of Mass General and the Martha’s Vineyard Departments of Health. It is unjust and increases the power of this complex of diseases and immune disabilities to debilitate and bankrupt our families.

We encourage messages of prevention and include numerous links to the Departments of Health materials here on the Lyme Center website. It is important that the Martha’s Vineyard Hospital and its parent, Mass General, acknowledge the thousands of chronically ill people in the Cape & Islands communities before their commitments to prevention will achieve value-for-money.

This is why focus on proper DIAGNOSIS and TREATMENT of Chronic Lyme has been left to the still unfunded Lyme Center of Martha’s Vineyard. We all — each one of us — are truly still on our own.
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Final Proposal for
The Martha’s Vineyard Chronic Lyme Disease Diagnosis & Treatment Project by Enid Haller, RCSW, PhD, under the auspices of the West Tisbury Free Public Library

Link to PDF document here.

I. Project Description

PROJECT OVERVIEW: This project is called The Martha’s Vineyard Chronic Lyme Disease Diagnosis & Treatment Project (“the Project,” or “LymeMV.org”). Here, “Lyme” or “Lyme disease” means for all practical purposes, “Lyme disease and associated tick-borne diseases.”

We propose for the funding of a) the diagnosis of Lyme-infected individuals on the Island; and b) the education of the local medical community in Lyme-literate treatment protocols through community meetings, support groups and regular doctor training workshops.

Dukes County has the worst reported Lyme disease infection rates in the New England which, itself, is place of origin of tick-borne diseases in North America. Paradoxically, Lyme literacy in care on the Vineyard is poor. Compounding the problem, the established Lyme disease diagnostic testing regime is prone to false negatives because of its poor, obsolete design.

In the gap, many Lyme-infected Islanders have treated themselves (inadequately in the vast majority of cases with a few weeks’ ration of doxycycline) based upon information passed on by word-of-mouth from a neighbor. It is typical for Vineyarders to say, “Oh, I’ve had that seven times,” when the likelihood is high that they never received adequate treatment in the first place. Now their Lyme has long gone chronic, and they have been organizing their daily lives and work habits around periodic bouts of fatigue and a myriad of perplexing unexplained symptoms. In the worst cases, individuals are severely neurologically impaired.

The failure is systemic and not reasonably blamed on the local doctors: Only this year have laws finally passed in the Connecticut and Massachusetts prohibiting medical governing bodies like the IDSA from revoking doctors’ medical licenses for treating chronic Lyme disease. Until now, it was medically and socially acceptable among doctors — and therefore rational — to steer clear of chronic Lyme diagnosis and treatment. But the path is clearing now for the Martha’s Vineyard community to address a long-pressing health crisis, and this project targets the most urgent areas for solution.

Generally, we propose to allocate half the funding directly to paying for individual lab tests through the best-known Western Blot lab protocol (IGENEX) and the balance of the funding for educating doctors, medical professionals and patients through forums, panels and workshops based on ILADS (International Lyme and Associated Diseases Society) best-practices in Lyme disease treatment.

Patient information accruing throughout the 5-year funding will provide statistical support for adjustments and new targeted services. Additional funding raised from outside sources and patient fees will be used to start up the activities of a medical clinic – Lyme MV.org – dedicated to Lyme disease diagnosis and treatment on the Vineyard.

ADRESSING THE IDENTIFIED CRITERIA: The Project addresses an existing epidemic of chronic disease affecting a significant portion of the Martha’s Vineyard’s year-round residential population, estimated to be about 15,000 people.

Behavioral Health – Lyme’s physical symptoms are becoming better understood but few people are familiar with Lyme’s psychological effects and its implications for substance abuse. During the last year and a half that Dr Haller has been talking to Islanders with chronic Lyme disease, she has heard numerous accounts of people self-medicating their chronic pain with street drugs and prescription medications. An alarming number of Island substance abusers may have undiagnosed Lyme disease. Numerous studies can be cited linking Lyme disease with mental disorders.

Chronic Disease Prevention and Management – Health Protective Factors – The Project is focused primarily on diagnosis and treatment, but its core curriculum shall always include the latest information about Lyme disease prevention that every household can apply.

This Project does not intend to address the prevention measures that can be applied at the municipal level for animal population control and disease management. Such measures if they are to have a meaningful impact on the animal-to-human disease vector are both expensive and politically sensitive since they involve eradication strategies for deer, mice, mosquito, bird and other prized animal populations often through environmentally damaging pesticides and birth- control tactics that are tricky to implement and difficult to measure.

Health Care Access – Health Risk Factors – A core component of the Project is to pay for Lyme testing for Islanders. The budget allocation is not large enough to cover everyone, so the Project will explore the potential for Massachusetts health insurers to cover Lyme testing. There are also charitable third-parties who have committed to funding testing through the IGENEX Lab, and the Project will help administer Islander’s applications through such processes in cases where the Project is unable to cover certain individual’s tests directly.

The other core component of the Project to train Island medical personnel in Lyme- literate best-practices will increase access to care for many Islanders. The LymeMV.org clinic – an extension of the Project – will recruit Lyme-literate doctors to the Island if education proves insufficient.
Public Health – Vector-Borne Illness, Chronic Lyme Disease falls under every category: substance abuse, mental health, youth risk behaviors, Lyme disease and other tick-borne illnesses, chronic disease prevention and management and healthcare access.

Implemented effectively over a 5-year period, the Project will increase the rate of cases treated appropriately and successfully on the Island.

ADDRESSING UNMET COMMUNITY NEEDS: There is currently no place on the Island of Martha’s Vineyard where a person can receive treatment for chronic Lyme and associated infections.

State-of-the-art of Lyme-literate care involves proper and early diagnosis (from a sound laboratory), peripheral knowledge of co-infections, application of multiple antibiotics (possibly intravenous) over months (perhaps years), and the dietary, immune and probiotic support necessary to carry out long-term treatment. The Lyme-literate doctor combines a talent for solving puzzles and long practice in integrating traditional with non-traditional therapies. The Island has no such an asset; but the Project meets this need.

TARGET POPULATION AND IMPACT: The CDC recorded 2,336 reported cases per 100,000 Massachusetts population in 2005; that’s 2.3% of the Massachusetts population reporting in one year.(1) The actual population rate of Lyme disease occurrence, however, is likely greater than 2.3% in Massachusetts because even the CDC estimates that reported cases may account for as little as one-tenth the actual incidence of Lyme disease; this is because so many cases are known to have gone unreported for several to many years.

The Martha’s Vineyard population of year-round residents is agreed at about 15,000.(2) Of this number, a significant portion can be expected to have been affected by Lyme disease,

1 http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5623a1.htm#tab
2 http://en.wikipedia.org/wiki/Martha%27s_Vineyard

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perhaps reaching a few thousand individuals suffering ongoing intermittent or chronic Lyme disease, including latent undetected cases as well as a certain number of new cases each year.

The Project expects to be to fund 10 Western Blot tests per month; about 120 cases per year (a basic Western Blot test at IGENEX Lab costs about $260). Doctors willing, the Project will educate local doctors in the best methods for treating chronic Lyme disease; so, best- practices in treatment will grow geometrically from multiple sources. And any Lyme-literate doctors being attracted to live on Martha’s Vineyard (by the Project or for any other reasons) will impact hundreds of families here.

Several hundred individual Vineyard residents have contacted Dr Haller through her monthly movie viewing and information sessions at the West Tisbury Free Public Library and via the Lyme Disease Support Group she runs at Howes House. These people, if they should all reach out for diagnostic support from the Project, would represent its first two years of diagnostic cases.

GOALS: All Project funding associated with this Priority Grant ($5,000 a month) will go toward paying for individual’s Lyme tests and the monthly doctor training sessions (which requires bringing outside experts to the Island). The Project’s additional sustainability objective is to form an ongoing Island-based non-profit Lyme clinic (“LymeMV.org”). Accordingly, all cash-flow needed to establish and build out the clinic will come from other funding (including fund-raising and patient fees once medical activities should be able to commence).
The Project is principally dedicated to diagnosis and treatment of chronic Lyme disease. It’s goal is to influence the maximum number of actual chronic Lyme-positive individuals to identify themselves and move into a valid clinical diagnosis and, from there, into efficacious

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Lyme-literate care and cure with all facilities being available on-Island and affordable – eventually either covered completely by Massachusetts health insurers or supported through a non-profit fund (the latter being outside the domain of this Project).

A key component of the project is to educate local doctors and families in such a way that new cases of onset Lyme disease are clearly identified and treated immediately. Here, the goal is to ensure that Lyme-infected individuals get adequate treatment early in order to prevent the disease’s progress to the chronic phase where treatment complexity, risk and cost of treatment increase so dramatically.

TIMELINE: Year 1 – non-profit entity formation, application for 501(c)3 status; funded monthly doctor-training sessions begin immediately; funded Lyme testing begins; Library information sessions and Lyme Support Group activities continue.

Year 2 – continue the above; focus on the organization of the LymeMV.org clinic; general fund-raising to expand diagnosis & treatment reach.

Year 3 – continue the above; additional new focus on long-term research;
Year 4 – same as Year 3 with additional emphasis on LymeMV.org clinical activities Year 5 – same as Year 4 with even more emphasis on LymeMV.org clinical activities Perpetuity – LymeMV.org clinic is fully up and running.

II. Organizational Preparedness and Capacity

MISSION STATEMENT: The Martha’s Vineyard Chronic Lyme Disease Diagnosis & Treatment Project shall be dedicated to bringing best-practices in medical diagnosis and treatment for chronic Lyme disease to the Island of Martha’s Vineyard.

CAPACITY TO MANAGE THE PROJECT: Dr Haller will direct the Project herself

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with the oversight of The West Tisbury Free Public Library along with the support of volunteers and collaborative support from the Vineyard alternative health community as an extension of the current Lyme disease information and support group activities to which she presently commits approximately 20 hours per week of her own time.

EVIDENCE OF EXPERIENCE: Dr Haller’s success in establishing a coherent focus in the Vineyard Lyme community reflects her seventeen years’ experience as a practicing social worker and psychological clinic executive in New York City (1990 – 2007). She established and ran her own psychotherapy clinic, Behavioral Arts (58 West 88th Street), for eight years (1997 – 2006) specializing in substance abuse and attention deficit disorder.

III. Project Collaboration

LEAD ORGANIZATION: The West Tisbury Free Public Library has offered to receive and allocate funds on Dr. Haller’s behalf until the formation of the new non-profit entity – LymeMV.org — is completed.

STAFF, RESPONSIBILITIES, RESOURCES, DECISION-MAKING: Dr Haller herein requests office space to be provided by Martha’s Vineyard Hospital for the duration of the Project. She will attract volunteers to assist with administration, record-keeping, patient testing processes and monthly doctor-training workshops. Dr Haller is the executive responsible for management and personnel decisions.

COLLABORATING ORGANIZATIONS: A number of Island health organizations will be able to participate directly in the professional education component of the Project, since Lyme best-practices workshops are open to professionals. Dr. Haller intends to collaborate with the following people (organizations) on the Island in mutual support: Sarah Kuh (Dukes County

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Community Services), Amy Houghton and Robert Tonti (Vineyard Nursing Association), Susan Sanford (Vineyard Complimentary Medicine), Kristine Kopp (Slavin Chiropractic), Oceana Rames (Holistic Health Alliance), Matt Poole (Edgartown Board of Health).

LETTERS OF SUPPORT FROM TWO COLLABORATORS: [attached]

IV. Project Innovation & Replication Potential

INNOVATION: Lyme-literate care is innovative because it combines holistic methods in immune system and digestive system support with traditional Western antibiotic therapies and also Lyme co-infections are complex, non-obvious and require special knowledge to diagnose.

NEW OR EXPANSION OF EXISTING SERVICE: The Project will bring new services to Martha’s Vineyard.

INNOVATION TOWARD IMPROVED HEALTH OUTCOMES: Lyme-literate doctors report patient recovery where conventional care has failed, and often failed in a correct diagnosis.

ENSURE NO DUPLICATION: We are aware that no Lyme-literate medical practice exists on the Island of Martha’s Vineyard. V. Impact, Outcomes and Leveraging Resources

EVIDENCE OF IMPACT OF SERVICES ON THE COMMUNITY: This year, Dr Haller has handed out several hundred IGENEX test kits to people who have repeatedly come back negative from the hospital’s designated lab. A number of these cases have received a positive clinical Lyme disease diagnosis with the support of information from the IGENEX Lab test and they subsequently began treatment. The differences in lab protocols are significant and well-documented. The information Dr Haller has disseminated into the community concerning

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the seriousness of chronic Lyme disease and the specific nature of the myriad symptoms has been influential for a wide number of individuals’ diagnoses and pursuit of care. With financial support, Dr Haller expects to increase her community impact.

UTILIZES PROVEN APPROACHES: The Project will use IGENEX Lab’s proven Western Blot test and Dr. Richard Horowitz’s treatment protocol for chronic Lyme disease.

MEASURES OF SUCCESSFUL OUTCOMES: Measuring outcomes of all cases presenting in the Project is essential. Over the 5-year duration of the Project, each case will be tracked. Measuring efficacy is key to iterating protocols.

ADDITIONAL SOURCES OF CASH OF IN-KIND SUPPORT: Dr Haller’s commitment of time is uncompensated. The Project further depends upon a grant of office space from the Hospital. Additional services will become possible through further outside fundraising. Moreover, the long-term development of the Project’s diagnostic and treatment services into a professional clinic called LymeMV.org will generate revenues to support full staffing.

VI. Local and Consumer Input

UNDERSTANDING OF THE COMMUNITY: From working within the community for the past year Dr Haller has come to know many people suffering from Lyme disease — either undiagnosed, misdiagnosed or recurring with partial treatment. Most families among year-round Vineyard residents either have a case of Lyme in the family or they know someone who does. Many remain ill and don’t know what to do about it. Additionally, there are more than a few cases who have spent their life savings chasing a variety of Lyme treatments off-island and they are disappointed and exhausted. A great many people are expressing the need for real care.

PROGRAM BENEFICIARIES SHAPED THE DESIGN: Dr Haller, her husband and

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daughter were diagnosed with Lyme disease in mid-2009. Consequently, Dr Haller’s eighteen months of research on Lyme disease, its history and treatment modalities has resulted in her improving health and a wealth of knowledge that she has been sharing with the community. She sought the best care available and after experience with numerous doctors throughout New England she found Dr Richard Horowitz in Hyde Park, New York. His protocol, developed from over 25 years working with cases of chronic Lyme disease, marries anti-biotic therapies with dietary techniques and herbal, vitamin and probiotic supplements. Dr Horowitz has been the President of ILADS and has a doctor training program at his facility to help physicians learn his Lyme-literate protocol. Dr Haller designed this Project according to the resources she wishes were available immediately to herself and her family on-Island.

COMMUNITY INPUT: Dr Haller hosted the first monthly Lyme Support Group meeting at Howes House on October 18th (2010) with about thirty individuals attending. Their signatures of support for this Project are attached.

VII. Project Budget Narrative

Generally, up to $2,500 per month will be allocated to Lyme testing (to IGENEX Lab to cover the Western Blot test for a maximum of 10 patients per month); and up to $2,500 per month for consulting fees and travel expenses for a single one- or two-day visit by an expert Lyme-literate physician to present the monthly doctor-training workshop.

Legal & administrative fees for the formation of the non-profit entity, LymeMV.org, could reach an estimated $3,500 – $5,500 in the first year, not recurring. Other expenses reflect the costs of outside fund-raising efforts and office supplies.

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Link to PDF document here.

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