Tick-Borne Disease Working Group Meeting 2 pt 2 – Stakeholder Perspectives and Public Comment

Tick-Borne Disease Working Group Meeting 2 pt 2 – Stakeholder Perspectives and Public Comment

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With this next stakeholder, perspective, I would like to introduce dr. Catherine, Brown, from. The council in state, and. Territorial. Epidemiologists. She. Is on the phone not here in person so, we will virtually welcome, her dr.. Catherine M Brown is a deputy, state epidemiologist, and. State public health veterinarian. For. The Massachusetts Department of, Public Health. She. Has oversight, of surveillance for, an education. About zoonotic. And vector borne diseases in, Massachusetts. And participates. Actively through. The Council of state and territorial, epidemiologists, in. National. Discussions, about tick, borne diseases. CSTE. Is a member based organization. Representing. Applied. Public, health epidemiologist. As state. Territorial. Local, and tribal health, department's, CSTE. Promotes, the effective, use of, epidemiological. Data to. Guide Public, Health practice and, improve health, CSTE. Supports, effective Public. Health surveillance and, good. Epidemiologic. Practice, through training capacity, development, and peer consultation. Let's welcome Catherine. Good. Morning can everyone hear me okay. Great. All right thank you I certainly. Wish that I could be there in person but I would like to convey my deep appreciation for, the invitation. To, present to the working group on behalf, of the Council of state and territorial epidemiologists. On this. Very important, topic of tick-borne disease challenges, to Public Health and just. Just. To get started I want to let you know that I have spent the majority of, my public health career, in Massachusetts. Which is one. Of the state's most heavily impacted, by Lyme disease and I have spent countless hours, speaking. With residents, who are actually, afraid to go outside due, to the risk of Lyme disease I have, spoken with health care providers who are frustrated, by the limitations, of Lyme laboratory, diagnostics, and with, patients, who are continuously, struggling with the effects, of the disease but. I also have to say that I actually live, here Massachusetts. As well work. Is not my entire life and and, Lyme disease has a personal, impact on, me my family, and my friends so. Because of all of this I really care passionately about this issue as do many of my colleagues and, I hope that what I share with you today can assist a working group as you move forward with your efforts. Second. Slide please so, just, as a quick, review the Council of state and territorial, epidemiologists. Affectionately. Known as CSTE it's. An organization. Of epidemiologists. At state. Territorial. Local. And tribal. Health department, and it serves as one of the institutions. That helps advocate, for public health at all levels, the. Organization. Is engaged in many activities but, there are two that, are especially. Important, for today's discussion, and the, first is that CSTE. Actively. Promotes the effective, use of epidemiologic. Data to. Help guide Public, Health practice and, improve. Health, and these, are things that are especially critical in, today's world, of big, data and near, real-time information. Sharing. The. Second, activity of particular. Importance, for today is that CSTE. Supports, effective Public, Health surveillance and. Epidemiologic. Practice, by providing. And, facilitating. Training, opportunities. Which, include, peer to peer consultation. And the, aim of this, is to develop, capacity. At all, jurisdictional. Levels of Public Health next. Slide please. So. Within Public Health practice as a whole. Epidemiologists. Are linked to several, essential public health services, and these, are first, to. Monitor, community, health status, and burden. Of disease in, order to first identify problems. Second. To diagnose, and investigate. Health problems, and hazards, that are occurring, within those communities, to. Further describe, those problems, and then to work with partners to develop effective, interventions. Which. Leads, the third, essential, service which is informing.

Educating, And. Empowering, people. Around. Those, health problems, and the, necessary, interventions. And this, all actually, comes back full circle. Because. Epidemiologists. Need to continue, to monitor health, status, so, is to assess, the effect, of those interventions. And adjust, them as necessary in. An iterative, process. Next. Slide please. So. Many. Of you may know this already but for those of you who are not sort of immersed, in the. Work of Public Health in. I I want to convey to you that in order to perform these essential, services, public. Health departments. Have a broad, authority. To, collect, data, for. Use in preventing, and controlling disease. In and in. Order to protect the public's health and, so. State and local health jurisdictions. Are authorized. To receive information. About cases. Of reportable. Disease, from. Both diagnostic, laboratories. And healthcare. Providers and to. Use that information to investigate. Cases. Identify. Case contacts. Who might require care, trace. Outbreaks, and, identify. Emerging, diseases, or unusual. Manifestations. Of disease, and. You. Know this authority, to collect data. Carries. With it a really great responsibility. To each individual. Patient, so. Public health practitioners. Are required by law to collect only those, data which are necessary for, the Public Health function, and, also. Not to release information that results in the identification. Of an affected. Individual. But. We also have, the, extraordinary. Responsibility. To use those data in, proactive. Ways to help improve the lives of individuals. Next. Slide. So. Public health surveillance and, that, is that's really the performance, of the, an efficient, and monitoring, essential, services, that I mentioned previously, has. As we all know shone national. Increases, in first, and foremost Lyme disease but. Then also in, other diseases that, some. Of which impact my jurisdiction. So anaplasmosis. Babesia. Says Powassan, virus and. The. Spotted fever work at ciosest diseases. And then. Is if, that weren't enough we, have also been. Identifying. New, tick borne diseases that, have to be added to the list and some of these include bourbon virus, Heartland. Virus, Borrelia. Mayo kneei and Borrelia, miyamotoi. Surveillance. Has been absolutely, critical to detecting. And then monitoring. Trends over time, and, space of these diseases. Now. Disease. Surveillance, requires. The use of standardized. Case definitions, and these, definitions, are absolutely.

Critical, And necessary to produce data, that. Can be compared, year to year but also between, jurisdictions. I, think. Some confusion, sometimes arises in that these definitions are specifically. Designed for, surveillance. Purposes only, and, not, for diagnostic. Purposes and I. Know that, folks at the Centers, for Disease Control the. People that I work represent, at the Council of state and territorial epidemiologists and. Local. State and tribal and, territorial Public. Health Department all strive, to ensure that those, health care providers, and patients. Understand. That there is a clear distinction, between, case. Definition, standards, and clinical, diagnosis. So. These case definitions. Require that we collect, both laboratory, and, clinical, information, not. All of which may be obtainable. Or even available for every patient and, in. States, with a high incidence, of any tick borne disease the. Burden, of this surveillance falls, upon public, health health. Care providers, and reporting. Laboratories, and data are therefore often incomplete. However. The data that are available. Are critical. For defining, risk factors, for disease and, for, development of specific prevention. Messages, and these, data also, serve as a platform. For, research. Next. Slide please. So. The surveillance data that, have been collected, on all tick borne diseases have. Contributed, extensively to. Knowledge, about the need for and, development, of two primary, intervention tools, that. Are available to, public health to help mitigate the impact, that tick borne diseases have, on communities, and this. Brings us really to the third essential service of, epidemiologists. That I would mention previously. Which, is informing. Educating and. Empowering people. Around the health problems, and the interventions. And in, this case these efforts, are targeted, at, education. Of health care professionals, about the changing. Distribution of disease and, emerging. Tech borne diseases and. Education. Of the public about the true. Critical, need for tick. Bite prevention. Next. Slide please. So. The surveillance data that have been collected have also helped inform public health of some critical needs and this, is absolutely, not an exhaustive list and, nor is it intended to be I think, it will also echo. Some of the comments that you've heard previously. But, the gaps that I'm going. To address are really specific, to surveillance, activities. And to primary. Prevention, preventing, people from being exposed, to the disease in the first place, so. We need better, Diagnostics. Especially. For diseases. Like Lyme disease where diagnosis. Is based on antibody, detection rather. Than pathogen, detection. We. Need improved, access to, laboratory. Testing. For emerging, diseases such as policin, rather. Than trying to rely on just a few centralized. Laboratories. We. Need continued. Support, for development, of public, health infrastructure. With, less focus, on disease, specific. Resources. And more, broad-based. Support. So that in midgel jurisdictions. Can, direct resources, at the, places where that they identify, they have the biggest gaps. The. Use of electronic, health records, and real time disease reporting, processes, through, electronic. Laboratory reporting, and mining, of the electronic, health record data is, critical. To sustainability. Of, surveillance, and needs, to be prioritized. For development. We. Desperately, need, basic, research into methods of effective, vector control and in this case I mean tick control so, that we finally could have some, tool that could be applied on a community, level rather.

Than Relying on personal. The personal prevention. Messages, that we have right now and. We. Need assistance. With outreach, to achieve widespread. Behavioral. Changes, around, the use of those, personal, prevention, methods methods. Because. Even, if we get effective. Vector control and a vaccine, we are probably still, going to need to rely on personal prevention. So. That concludes my remarks today and I really want to reiterate my deep appreciation for, the invitation, to speak with you both, on behalf of CSTE, and as a jurisdiction. That is in the heart of the struggle with Lyme and other tick-borne diseases, thank. You very much. Thank. You very much Kathryn and next, up we have the final, stakeholder, perspective. Dr.. Sarah Vetter with the association. Of public health laboratories, Sarah, please feel she's. On the phone we have another virtual presentation so. Dr. Sarah Vetter is the chief of infectious diseases, at the Minnesota Department of Public Health Laboratory, the association. Of Public Health laboratories, or, aphl. Represents. State and local government, governmental. Health laboratories. In the United States, that monitor, detect, and respond, to health threats. Aphl. Works to strengthen laboratory. Systems, serving. The public's health health. In the United States and also globally, welcome. Sarah. Thank. You and, thank you for this opportunity to speak, with you all today. Aphl. Strongly. Believes that building, and maintaining a comprehensive. Surveillance, system, for, the detection of endemic and emerging, tick-borne diseases, and investing, in the development of new diagnostic. Approaches. Is critically. Important, to maintaining. The public's health. The. Current US surveillance, system, includes, a limited number of states that receive federal funding, to conduct tick-borne. Disease. Surveillance. Despite, the emergence, of new tick-borne. Diseases, and the, fact that the areas, in which ticks, are found, continue. To expand. The. Availability, of, diagnostic. Tools and guidance, on the use of Diagnostics. For emerging, tick borne diseases such. As bourbon virus Heartland, virus Rickettsia. Phillipi and Borrelia, miyamotoi is. Extremely. Limited.and that, while the available diagnostic. Tools and guidance on more common, pathogens, such as Lyme disease are due, to be updated, to reflect technological. Advances. The. First recommendation, to the working group is to, build a capacity to detect, and respond, to all tick borne diseases of Public Health significance, this. Means to define and Institute. A comprehensive. And adaptable. Tick-borne, disease, surveillance, system, that incorporates. Epidemiology. Laboratory. And M, kamil entomology. Resources. For, the accurate, and timely, detection. Characterization. And response. To tick borne diseases in, the, US. Have. The ability, to characterize. The, regional, differences in vector. Take, vector prevalence, and the associated, pathogens. In order, to enhance understanding of, the role that different, tick species, may play in the, perpetuation. Of tick, borne diseases in. Their, respective geographic. Regions, and finally. To learn the, prevalence, of the pathogens, in vectors, and how this prevalence varies. Geographically. The. Data on prevalence, of path in, vectors, can, be used to guide enhanced, surveillance for disease in humans and focus, tick control efforts if resources.

Are Limited. The. Second recommendation is. To encourage, the development and use. Of new, or improved diagnostic. Tools, or, the advancement. Of Diagnostics. Currently, in the pipeline to, improve. The accuracy. And/or. The rapidity of tick-borne. Disease, identification. Integrate. New laboratory. Diagnostic. Capabilities. Into tick-borne, disease, surveillance programs, as merging, novel, pathogens, are discovered, once. A cluster, of rare disease, caused by an, uncommon, pathogen. Is identified. Perform. Enhanced, active, surveillance. We. Can use technologies. That detect multiple pathogens. Simultaneously. This. Is important, since early, intervention. And treatment is critical yet. Early signs and symptoms, of many of these diseases. Are similar. Multiplex. Assays. If sensitivity. And specificity can. Be maintained, offer, the. Potential, to rapidly rule in or out tick, borne pathogens. And reduce turnaround, time to, diagnosis to diagnosis. We. Suggest, fostering, an open, dialogue, between diagnostic. Manufacturers. Diagnostic. Laboratories. And fda, to, able to encourage, the mission, and clearance, of assays, that fill, gaps in the marketplace, and we'd. Like to suggest to increase, the appropriate. Use of recombinant. Proteins, that, improve the specificity. For serologic. Assays, as an. Example panels. Of recombinant. Proteins have been shown to be more specific than. Whole Borrelia, burgdorferi life. States in serologic. Tests for diagnosis. Of Lyme disease. Recombinant. Line blot assays, have greater specificity, than. Western blots with, whole Borella, extracts. The. Third recommendation. Is to encourage. Widespread. Access, to high-quality. Laboratory. Tools, this. Includes, the enforcement of existing, mechanisms. To, ensure diagnostic. Tools currently, in use meet, minimum quality, standards. Developing. Mechanisms to. Promote, use, of standardized. Reagents. To ensure, results, results. Analysis. And interpretations. Are consistent. Across all, laboratories. Performing, testing. Ensuring. Broad geographic. Access, to quality, diagnostic. Testing for all tick borne diseases through, the establishment. Of laboratory, networks with, the expertise, to perform, specialized. Or enhanced, testing and characterized. Characterization. Of these diseases and to. Establish national. Training, programs, for tick-borne. Disease, testing. The. Forest' recommendation. Is to develop, updated. Or new, testing, guidelines for, tick borne diseases and, implement. Mechanisms. To allow for rapid, updates, when warranted, consider. Establishing a. Mechanism. That allows for rapid updates to guidelines, as novel, tick borne pathogens. Are discovered, technology. Advances, are released or additional. Laboratory, testing, information is, available. The. Fifth and final recommendation. Is to improve, guidance, for and education. Of clinicians on, the most appropriate use, and interpretation. Of available, diagnostic. Tools. Different. Test methods are best used in different disease stages for. Example, PCR. May be the most sensitive. Method, to diagnose, disease, in early acute, samples, whereas. Serological, testing. May, be preferred, for later samples, different. Specimen, types may, be required, for these alternative, methods in. Appropriate. Test order ordering, can, lead to, missed, opportunities. To. Diagnose, cases, this. Concludes, the, recommendations. From. Aphl. And again I'd like to thank you for your time. So. That ends. The stakeholder. Presentations. We're going to transition, now to another. Round. Of public comment, and. Just. Reviewing, how that went yesterday was, wonderful, to have. Our expert facilitator. Today. We'll, have semi. Expert, facilitators. With Kristen and myself so, we'll just remind everyone that this is a time. Of chance. To hear public comment, and we, all approach this with openness, in respect. And and mostly gratitude, that the people here today are, willing. To share in front of the, public their, experiences. And their their, comments. And we. Just look forward to hearing more of that the time, allotted for each presentations. Three minutes and. We'll. Begin. With with. The public, comment now excellent. Thank you John and as. John said three minutes each he will be timekeeper. We'll be roaming around and. We. Have a few late signups, for public comment and if people keep two three minutes we believe we'll be able to fit, everyone in so. First. Up let's hear, from Gil Lake and please self introduced, yourself, because. All I have is first name so Thank You Gil. Hi. My name is Gil Lake. Thank. You for your attention I'm I am NOT truth cures org, but I. Gained. Great knowledge from that organization.

Concerning. Lyme disease. Respectfully. I have I have crawled on, thirty. Three hundred and eighty nine kilometers. On Wounded Knee and no, spleen, to, lie to you, today a. Long. Long time ago my. Great-uncle Sam. I had. A saying and, it goes as thus we, the people of, the United States in order to form, a more perfect union, establish, justice. Insure. Domestic tranquility. Provide. For. The, common defense, promote the, general welfare and, secure. The. Blessings of, liberty to, ourselves and, our, posterity do. Ordain and. Establish, this, constitution for. The United States of. America. Please. Consider, the. Exit, ye, who wrote. In on the proscription, of the Dearborn Conference. Amongst. You if an e. Misfeasance. Malfeasance. And and nonfeasance. Are cost, us bail I in any other scope, a cause. For war to to, promote this for decades and not actually. Do anything about, it. The ozb a. Disorder. For example. And. Expressed. In a pandemic form however you do that but it's all over it's not just in, Western, Michigan where I got the tick I had, to move completely, out, of my territory, into, the desert, just. To survive I didn't have a doctor, I still. Don't have a doctor it's not available. To a very, large, portion. Of our society. I don't, know if you guys were aware of that you, all have doctors you'll all have lawyers and collectively. You have a lawyer, I don't know why there isn't one on the panel I don't. Know why there isn't a psychiatrist. On the panel, to, to. Differentiate. Some, of this cognitive. Dissonance that. That. Is promoted. Through. The CDC. Set, all these these, corporations, have got their own agenda, and. It's not the same as mine I just want to survive till, tomorrow and. I want and, I've had neighbor, neighbor, neighbor, die from, this affliction. It. Doesn't seem to to. Rattle, any cages back home, they. There aren't when I was a truck driver as. A CDL. Driver. Hazardous. Materials, the very first thing we, had to do, if. There was a problem is, it. Not, even if there was a problem is to notify the public you placard, the, vehicle. Placard. Give. Everyone attention to this very, very important, matter thank, you. Thank. You Gil and we, are giving it our attention, and every, perspective, like. Counts so thank you for sharing yours, Jenna. Lucia Thayer you are up next Jenna. Hi. My name is Jenna Lucia Thayer and, I. Have worked globally for, 32 years on the rights of the marginalized, and, held. Senior advisory, positions. For. The US government in the United Nations and, I'm the founder and director of the, ad-hoc committee for the health equity in, the, icd-11, borreliosis. Codes, and the. Global network on institutional. Discrimination and, my. Expertise. Includes Human Rights and transparency. And, accountability of governance. So. According. To one. Of many odd articles, that has been sponsored, by 32. Million dollars in NIH grants. Translational. Research grants, I'm also. Nefarious. And. Dangerous. And. I'm. Being sponsored by unknown, and powerful, sources so. I, just want you to know that my husband has invited everyone to our house for a barbecue so.

You Can know who he is. Anyway. Today I'd like to talk about some. Observations. And solutions, to, enhance representation. Transparency. And accountability in, the process, that were undergoing, and. I'm using my expert hat on this. I have. Personally, participated. In numerous federal. Advisory boards, and I. Know that federal law recognizes. Two valid, and distinct options for. Public members who are. Participating. One. Can be either, a representative. Or a, special. Government employee. Representative. Provides, the points, of view of non-governmental entities. And/or. A recognized. Group such as Lyme patients people. Who treat Lyme etc. Doctors. Who successfully treat those are persistent, and complicated, forms of the disease, advocates. Who are perhaps promoting. Valid diagnostic, tests such as the nested, PCR. DNA sequencing. Technologies, that. Use. A direct. Detection as currently available and, can, actually identify the illness, before it disseminates. In contrast, a special. Government employee, which is what the current public, members have been asked to do, promote. Government, interest first and are. Under the supervision on operational, control, of the. Agency in this case HHS. Even. On the days when. They are not serving on the working group and. As. Employees, their wide-ranging, restrictions, include, legal, financial. Representational. And research, limits for. Example they, are not allowed according. To the law as an. S ge to. Testify against Department, of Health officers, or government. Line policy, or on, behalf of the human rights defenders, of this group and, when I talk about the human rights defenders, I talk about the. Researchers. The scientists, and the practitioners, of Health who, are getting, much-needed care to this patient group, they. Are not allowed to generate earnings from. Research presentations. Publications. And media events that, counter, the line the, CDC's, Lyme propaganda. They. Are not allowed to state that the CDC, line policy, does. Not support, human. Rights violations, or, ignores the, many potentially, fatal medical, conditions caused by Lyme and I. Want you to know that these are all in records since June, 2017. They. Were accepted, by doctor, Dainius purists, who is a Special Rapporteur for, Health and Human Rights. So, given these considerations, and options I recommend. That all members be, converted, to representative, status thank you. Thank. You Jenna and. Next up we have Rachel, knew it. That's. Rachel nip it for. The record. Me. Too I have been violated, by, multiple, individuals, multiple. Times and I am not alone my. Perpetrators, are repeat offenders hailed, as pillars, of the medical world they are the righteous, keepers of the infectious, disease Lyme guidelines, they. Are the definitive authorities. They, are the priests, the uncles, the, Harvey Weinstein's, and they abuse their power. We know in part that they are perpetrators, because they do what every good perpetrator, does they, deflect, their guilt by blaming the victims the, patients, who are condescended. To Lyme. Doesn't cause those symptoms, ridiculed. Oh did. You find that on Google and. Written. Off it's not, Lyme its conversion, syndrome, and, just. To make sure that the perpetrators, preserve their air of superiority, they, constantly, discredit. And D, legitimize, the Lyme specialist, who threatens, their impervious, shields with scientific, evidence to the contrary I have, attended, numerous talks by infectious, disease doctors and dr. Kristina Nelson of the CDC, all of whom spent more than 50%, of, their talk making. It very clear to their audiences. Medical. Students, and primary care providers, that Lyme, practitioners. Are quacks. Who. Have gone rogue off the guidelines, and will endanger patients live with their treacherous. Protocols. Many. Of these treacherous protocols. Are the very same prescribed, long-term. By, dermatologists.

For Teenagers with acne by, infectious, disease doctors, for, patients, with TB, by. PCPs. For seniors suffering, from frequent urinary, tract infections, but. For some reason if a, Lyme doc prescribes, it for a bacterial, infection its, considered. Life-threatening. If. I had cancer doctors. Would think nothing of prescribing toxic, cocktails, that might save me because presumably it, might, make me better than my current cancer ridden self well, that's where a lot of Lyme patients are, at when. I found myself so, sick that death, looked like a better state than the life I was, subjected to me. The. Antibiotic. Free organic. Farmer, subjected. Myself to antibiotics, for one of the first times in my life I subjected. Myself for three years straight lots of them in crazy, doses, I can't, even imagine and, you, know what under. My Lyme doctor's care I did, not get seed if my, PICC line did not get infected and, I, am so, much. Better than, I used to be truth. My. Lyme doctor did not kill me my Lyme doctor did not harm me my, Lyme doctor used careful, treatments, that have been proven to make some folks better without, making them sicker my, Lyme doc saved me while, other Loaf local, doctors left, me to get sicker. There. Is something seriously wrong with a medical system that allows infectious, disease doctors. Rheumatologists. Neurologists. To diagnose. Psychiatric. Disorders, but won't let a Lyme doctor, diagnose. Lyme. There's. Something wrong with the medical system that punishes good doctors, who. Think critically and question the perpetrators, and listen to the victims it's. Time to stop the madness it's. Time to reveal the serious, perpetrators. It's, time to openly admit that this medicine is seriously, flawed it's, time to stop blaming and start, listening to the hundreds, of thousands, of victims it's. Time to call off the medical, boards and let, the good doctors, the critical thinkers take, the lead and heal the sick and start, healing this very bad chapter, in our medical history the day of reckoning will come the, culture of cover-up, is crumbling everywhere even here in Washington.

Perpetrators. Are being held accountable victims. Are being believed, so ask yourself, when, the day of reckoning arrives, which, side do, you want to say you were on. Thank. You Rachel. Great. Thank. You Rachel for sharing your story your courage, everyone who's speaking up we. Have a need holler next, and then John and I are gonna switch switch. Roles. It's. A mid Haller, and. I. Have, a Masters, in Social Work and a PhD in clinical psych, I am. On the board of the Dean Lyme Center and have been a Lyme advocate, for nine years. For. The last 11 years I've lived on Martha's Vineyard and I. Have been trying to educate everyone, on the island about chronic Lyme disease I started. The Martha's Vineyard Lyme support group nine years ago and the, Lyme center of Martha's Vineyard five, years ago during. That time I've only received help, from the from, and support from the alternative, and holistic. Practitioners, including, physical. Therapists, natural paths chiropractors. Etc. The. Martha's Vineyard boards, of health the islands Community Services the. Local doctors and health care providers, and in the walk-in clinics, and Martha's, Vineyard Hospital have. Been of no help to our chronic Lyme sufferers, for, over 30 years. Most. People I know, who. Have chronic Lyme on the island, including. Myself and, my family, have, never tested positive for chronic, Lyme using the two-tier testing, model the allies in the Western blood I, was. Not it. Was not until, I suggested, the island patients start to use the eye genex lab. That. We, all finally started, getting the correct diagnosis. Confusion. In the medical community has been compounded. By the actions, of insurance, companies who. Have both denied patients, important, care as well as proactively, threatened, and revoked the licenses, of doctors who engage chronic, Lyme patients, seriously. This. Has created fear, among the mainstream doctors, and has created and increased. The rate at which, normal. Easily, treatable, acute, cases of Lyme have gone chronic, my. Support group has. 859. Names on the mailing list and. We. Are not alone. There. Are thousands. Of Lyme support, groups across this country and the. World that provide support, at, this scale. The. Number of people in Martha's Vineyard who carry chronic Lyme disease and the co-infections, of boggles the mind, many. Of the patients on the bonaventure. Believe that they were infected from the Lyme Rex vaccine, that. Was heavily given years, ago, only. For a year but. Many do believe that they have contracted it from the vaccine. The. Lyme stricken patients travel from one specialist, to another until their patients and budget strains. To. The breaking point, or they just suffer, in denial and silence, the. Treatment of choice then becomes self medication, through alcohol and painkillers which, are typically.

Opiates, It's. It personal. At personal, cost, of our inability is systematically, cope with this growing disease is staggering. I've. Been directing, chronic, Lyme sufferers, till I'm literate doctors for many years now. Okay. They can't afford but. Most cannot afford to travel and see these doctors, who have, to charge out-of-pocket due. To the lack of insurance coverage for chronic Lyme finally. We are at the tipping point and the island medical community is slowly beginning to acknowledge the depth of this problem, Martha's. Vineyard is known as ground zero for chronic Lyme because. Towns on the top are all in the top top ten list of the Massachusetts, Department of Public Health, one. Tisbury. Two or Quinnie three, Edgartown, from ten West. Tisbury, the, Lyme Fiasco, is a financial. And economic, disaster. Insurance, companies, would save money if they would allow line, with our doctors to share their knowledge and, be, accepted, into the system our mainstream. Doctors need to be need, to be helped and educated. About how to diagnose, a treat chronic Lyme this, is a terrible disease and the situation, can be turned around with. The proper incentives, and honesty medicine millions. Of people can get their lives back and an, equal number can, be prevented, for suffering so badly and. If. I. Myself. And my family had not gone to dr. Richard Horowitz I would, not be here today thank, you. Thank. You Enid very much. Our. Next. Comments. Will come from Susan green. Good. Afternoon and, thank you for your service, my. Name is Susan green I'm an attorney and I've been practicing, law for more years than I admit at this stage, of my life I also. Am a Lyme, patient. Approximately. Ten years ago I was in the middle of a trial I had a seizure I lost, my ability to speak and retrieve language, curled, up in a ball and, all. Of my limbs were twitching and I would remain that way my memory was completely, wiped out I would remain that way for quite some time I, went. To doctor after doctor same. Story nobody. Knew what was wrong with me finally. I begged doctor, to give me antibiotics, he, was an infectious, disease doctor he, said to me you don't have Lyme disease he, says but you're so hysterical I'm gonna give you another test, and I'm gonna give you the antibiotics. Just to calm you down very. Reputed doctor, John Hopkins so. He gave me the test and he gave me the antibiotics. You. Could imagine his surprise when, several. Days later Wednesday, on a sick at 6:30, in the morning he called me told me I was off the charts I had, had four prior tests they were all negative, he. I went to his office and I had the most unusual experience. He. Leaned across his, desk and, he pushed a barrel, of antibiotics. At me and he, said to me I can't. Treat you you're a very very, sick woman and he, said but I would be drummed out of my society, if I were to treat you with long-term antibiotics.

I'm Very sorry you're gonna have to find another doctor and I, went from state to state looking, for a doctor who could take care of my needs it. Would be 20. Months of IV antibiotics, and 72. Hyperbaric. Oxygen dives, before. I would resume my ability, to speak I do believe I would be dead today but. For the doctors. Who risk their licenses. To. Treat me we. Have a terrible problem as. An attorney I told all these doctors if you get me back my ability, to speak, I will. Help you because, these doctors, come under attack from medical, boards on a regular. Basis, they, come under attack simply. Because they prescribe long-term antibiotics. It's. Insane, to me that a child with acne, can get a year of antibiotics. To treat their, skin, but, a person, with a progressive. And potentially, fatal disease. Cannot. Get treatment, for. More than 28 days because, we are the, only population, that. Seems to get the superbugs, it, doesn't make any sense ok so I defend, doctors licenses, before the medical boards many, patients, who saw that their doctors, were going to be in jeopardy of losing their, licenses, have gone around the country and passed, laws to protect doctors, who prescribe long term antibiotics. Everybody. The whole community, would celebrate when, these laws were passed but, I'm here to tell you that it hasn't stopped the medical boards because, what they have done now is they go around and they charge these doctors, with. They'll. Come up they they hold them to a higher standard of care they engage in a discriminatory. Practice, of singling out these doctors, based solely upon the type of medicine, that they provide, and now, they will go into their charts they'll hold them to a higher standard of care and they'll charge them with coding. Violations, record, violations. Record-keeping. Violations, and they. Are still in danger of losing their licenses, they spend, exorbitant. Amounts of money defending, themselves just to be able to serve the community I ask that you unfetter, the hands of these doctors, who, are on the front line of battling.

Trying To find a treatment, and help, these very sick and marginalized, people, thank, you Thank You Susan. Next. Comments will come from Linda Osborn. Thank. You very much for the opportunity to, speak today and I'm. Delighted to see this, collaboration. Of individuals. Working, on is tremendously, important, issue, my. Name is Linda Osborne and I am a resident of Hunterdon County New Jersey I live, with my husband of 23, years and my 19, year old daughter who is currently, attending University. Of Delaware if, it, wasn't for finals she would be in attendance with me. My. Story is similar to, the, many you've already heard I was, misdiagnosed for. Probably. At least two decades maybe longer due. To false negative, results. Produced by recommended, two-tier testing. The. Exact timeframe of my infection, is unknown, but. I, do. Recall when I was about ten my parents removing. An embedded tick from my head and that, was in 1974. I was, 10 I don't. Recall a lot of details from that time but, I do distinctly, remember, that year, I received, my first C, on my report card and, I, was pulled aside by my teacher for some moral support and TLC, I was. Off and, she. Could see it. Let's. Fast forward in. My. Early 20s I spent many hours rock, climbing hiking. Mucking. About the, Gunks in New Paltz New York, and in, Vermont. And other parts of New England I, was. Always outside and. It. Was then I started noticing some, cardiac symptoms. By. My late 20s, I became. Depressed and shortly, thereafter was, diagnosed, as bipolar I. Believe. That that diagnosis. Set the trajectory for the next decade of horrific. Experiences. That. I had with. MDS. And specialists. What. Happened is my. Mental health was, designated as, my illness, when. In reality my. Undiagnosed. Illness, was. Causing, my. Mental, and physical, decline. Where. My story do urges from. Others is that I I did have a very difficult childhood. There. Was in fact a degree of mental dysfunction that, resulted, from the challenges, of my earliest years I was. A product of my environment and, therefore I accepted, my diagnosis. And continued. In a downward, spiral. With. A growing list of physical symptoms and behavioral, changes. But. Here's the key point. Despite. The challenges, that presented, my, life in my first 20 years I. Was. Never suicidal I. Was. Bullied I was teased. But. At that time there is no internet, however guess. What, there were bathroom, walls and that was the 70s and 80s version of snapchat. The. Key point here is that, I, became. Suicidal. Once. I got into the advanced, and late stages of Lyme disease after her not having been diagnosed, for over, 20 years and, what. Made that insult to injury worse, was that I infected my only unborn, child through pregnancy and or breastfeeding. So. As I. Lay in my bed uncomfortable. In my skin, misery. With. Trying. To get through the treatment of this insidious. Disease I wanted. To kill myself. But. I couldn't, because.

They Had to stay in this world long enough to be able to help my daughter through this insidious, disease and, at. The same time contemplate. Whether. She was also having suicidal thoughts. Gentlemen. In the room I would like you to sit and think about your wives and your children and think. About what it must be like to wonder, every day when you come home from work where they're going to find your wife in bed dead. From an overdose, or your, child swinging, from a tree in the backyard. This. Is the reality of what this, disease does to people when, it is not diagnosed, and I. Will add I, did. See an lmg, and I. Did go for alternative, tests and I, was tested, positive, for lime, for. Ribisi oh ah one for. Brucella through, mycoplasma, pneumoniae. Tation. For candida, overgrowth high. Levels of lead high. Levels of mercury adrenal. Failure kidney, failure liver failure, I did. Extensive, antibiotics. That. Brought me back to life I was pulled out of the grave but. I will tell you I'm, not cured either and nor. Is my daughter who. Finally, tested positive, after several rounds of antibiotics. Thank. You. Thank. You Linda. Jennifer. Heath. Being. Able to speak today on behalf of all of us that are sick and dying with Lyme disease that are are not being diagnosed properly or treated. Thank. You for sharing your story because people are dying the number one cause used to be heart attack or stroke now, it is suicide because. People can't get the treatment they need my, personal, journey began. Dealing. With Lyme disease not knowing that I had Lyme disease in 2013. When I became deathly ill after, having. A routine dental cleaning. And I found a root, canal tooth the crown, of it had to be removed, and it replace when, they did that the infection, went into my body I got very sick, what. To doctors end up in the hospital, was, said that I needed to have a hysterectomy had, that almost died with an infected abscess. Hematoma, after that was, fortunately. The doctor on call made a life-saving, decision that saved my life that had a surgery that they, thought it was just an abscess, but when they got in there it wasn't infected. Hematoma. Abscess, so. I, was asked if I wanted a chaplain, and I said no because I was prepared to die I wanted, to die at that point I was so ill, and. And. I'm thankful to this day that I didn't because I got to see my granddaughter recently, just born, that. Was something that I didn't think I would ever see possible, so. I, went, through a, year, and a half of doctor doctor doctor specialist. After specialist, trying to figure out the, next step like, for cancer scares the next doctor I was going to see was an on Kyle, but, unfortunately I, ended up in the ER and when. I I had just had the least tests that I was one of the fortunate people that 15%. Of the population only. Our seronegative. I remain sterile positive, so. I actually, had a nobody response and. So the CDC called me asked me if I was out everyone, outside of our County, and I'm like of course I was just up at my daughter's destination, wedding so. I I. Guess. Some who can I go to because in the ER and the emergency room when I told you about that I had I needed, an extra test for Lyme disease the Western blot they said that they don't diagnose, nor treat Lyme disease and the ER and the, next person that I had to see was it infectious disease. Doctor, that had a three-month waiting list and I didn't have three months to go because, at that point it had already done two weeks of antibiotics, and I started throwing up for nine days story and I was left to death to die I had, great doctors before that but everyone that I went to and talked to and I mention Lyme they go you know what I'm. Sorry we don't treat Lyme disease you know like we'll help you a little run tests or whatever but we don't that we don't diagnose nor treat Lyme disease so I would, I didn't know where to go so praise, God I've been I'm a health dirty for 30 years I work with renowned nutritionist, and holistic doctors and so, I went from doing, the Western medicine that almost killed me for a year and a half I went back to holistic medicine and I, started.

Treating It holistically, with our deep tissue cleansing, enzymes. And oxygen, treatments, things that are voodoo to our medical world and that, need to be implemented I think God for dr. Horowitz that does that that brings that in because, we need more practitioners. Like that and I Lance that actually recognize that this is more severe so. I just want to thank you but. Yeah right. Now we have this fake line, it's. Funny that there's no proper testing for Lyme disease but right now the CDC, is, test. Marketing a new vaccine for, Lyme disease, but how, can you test for a disease that you don't even know how to test for how can you make a vaccine against, something that you don't know what to. Test for so you, know I think that we need to revisit, that and call. Your Congress, people and ask them to investigate, the 2-tier testing, because, that testing, is flawed as we all hear here people are not, it was there being left to die so thank, you so much for let me speak Thank You. Jennifer. LeBlanc. My. Name is Jennifer LeBlanc I'm currently an infection, control practitioner, at University of Maryland Medical Center my, bachelor's degree is in molecular and microbiology. I have a master's degree in clinical nutrition. I attended. At three and a half years of medical school and recently I was blessed enough to have graduated from the Johns, Hopkins Bloomberg School of Public Health. My. Story starts when I, was, born and raised in South Florida I became, ill when I was about seven or eight years old my, family often went, camping in the swamps of Florida I, soon. Had neck, pains went, to doctor after doctor my, mom brought me from one of the next no one could figure it out one, pediatrician thought well maybe you should have exploratory. Spinal, surgery and my mom said I don't think so. Nevertheless. I, had. Symptoms at wax and wane when. Some, symptoms which would disappear. Several. Months later or even years later more. Symptoms would come back and then, they'd be worse and then my symptoms will go away and they would come back and they would bring friends well. Since, I was a pre-med you, know I was going. To this conference where dr. oz was was presenting, and that's how I found the doctor who diagnosed, me and I said great I have an answer Lyme disease and how do we treat that and he's like oh well and. So began my my, additional frustration, of this journey well. I soon, discovered a, wonderfully. Courageous, physician, who, demonstrates, not only courage, and persistence. But wonderful faith as well and, it. Is because of him that I am standing, here, not. In pain I am, standing, here speaking I am seeing, and I am breathing and I. Say that because I was having seizures at which time I stopped breathing I was driving on the highway at which time I stopped, singing I went completely blind, on two separate occasions I had a hard time walking I felt like my legs were jello and would get out at any time I couldn't, come up with a sentence and Here I am speaking, in front of all of you and so. It is because of physicians. Like. Those who represent I'll, adds, that. I'm standing here that these Asians are still alive and breathing and. When. I was at Hopkins, we have to do. A capstone. Project and last. Year there was a publication, in the New England Journal of Medicine and I became very frustrated, and I said you know why. Don't we just. Clean. The slate let's start over again so from my project I want to go ahead and say alright let's put everything on the table here's the IDSA, side here's, the I'll add side and this is what I want my research proposal, to be for my capstone project the. Directors, of the infectious, diseases capstone, project, literally laughed at me and I, knew the response when I would ask this question but. I said dr., so-and-so can I ask why you left, and she goes haha well. Let's. Just say I don't, believe in chronic Lyme it doesn't exist and I said okay well that's what I thought. What. We need is. Education. I have educated, over 140. Medical students, on the, accurate. Information, on Lyme disease there are hundreds, of publications, that represent, what many of us are talking about here today I. Would. Like us to further diagnostic. Testing, by using metabolomics. Nanoparticles. That are already being investigated we, need to take advantage of the brilliant, minds of the epidemiologist. And public, health sector who. Can help us identify, exactly. Where these, pathogens, are and I promise you that that CDC map will, be not just blue in this corner in that quarry another corner it will be pretty. Blue. So. I with. My three minutes up I just, encourage all of us to continue to work collaboratively and, include, the public health sector and educate. Those.

Who Are in medicine, and entering medicine thank you so much, thank. You Jennifer. Christine. Lorenson. Hi. My. Name is Christine Lorenzen I. Believe. I was born with tick borne illness I. Experienced. Excruciating. Pain. As a child that, no one took seriously, I. Had. One known bite as a child. But. It wasn't until I got, bit by something in, Costa Rica. Then. I was unable to function, I. Have. My struggles, dealing with the roller coaster, of treating, and relapsing. Dealing. With insurance denials, after. Finally starting. To improve on a treatment regimen and, tough. Conversations. With my husband. When. Paying out of pocket is, the only option, I. Often. Feel, like. My treatment, is at the mercy of what. My insurance company, will pay for. Not. What is most effective, for my treatment. But. I am still one of the lucky ones. I'm. Lucky because I'm alive and not, here today. So. Many do not make it. The. Ability to get coverage for treatment. The. Lack of acceptance and knowledge. The. Loss of function the. Pain, the. Loneliness. The. Bullying, by doctors, who follow outdated, guidelines, and ignore, new research. Who. Send us for psych consults. It. Can be too much for our bodies and our, minds to handle. I'm. Here. Today to, give voice for those who, are no longer able to fight. The. Current situation is, not working. We. Are at a point where doing nothing is no longer an option I. Ask. The working group members to put aside greed, ego. And politics. This. Is an epidemic and one, that can be solved, if everyone, puts forth the effort to do the right thing in an. Open-minded, collaborative. Manner. My. Friend's daughter Kira Mitchell was. One of the ones we lost this year. She. Was a young woman who contracted, tick borne diseases as, a child in New, York as did, her sister and brother, Kira. Was 19 years old she. Should, have been in the prime of her life but. Instead dealt, with severe effects from Lyme and co-infections. In. Honor. Of her her, family started Kira's traveling, stones. People. Leave a stone in someplace they think Kira would love would. Love to have been well enough to visit. If. I may I'd, like to give each of the. Members of the working group a stone in honor of Kira, who, I believe would. Have wished to be here to witness this historic, collaborative. Effort to, bring forth change that. She knew was, so desperately, needed I, ask. You to keep it as a reminder of, the. Thousands, that we've lost. Especially. Those she couldn't. Who. Choose death. Because. The pain of living and loss of hope was too great to bear. They. Will not be forgotten. Thank. You thank. You. Our. Last comments. Will come from Bob Sabatino. Thank. You I'm gonna try to keep myself short and on my own time I. Would. Like to thank member, alarm services, that are here, and members. Of nonprofits. And research organizations and, doctors I'm. Here both as a patient, and an, advocate I am. The founder and, director, of Lyme, society in New York I've. Had. What. I would call pleasure, of meeting many of you already people, in this room and people watching. A few, years ago I had the pleasure of meeting Kristin honey I don't know if it was at an open data event, or a Lyme event. But. Every. Single one has always been positive. I started. Out very sick very ill Lyme, and co-infections but, everyone that knows me this is probably the best shape I've ever been in right now, and I'm still treating, every day's hard I couldn't be here yesterday so I thank you for the time today. Through. Our time this, is one of the most, unique. Opportunities. I've seen happen I've know over, many years it's been very difficult for. Two sides to come together, this. Is so important. For, everyone to see I've, had the luxury of working with, many of you and I say it a luxury, because, being, the patient and being that sick I go, home every day and at the end of the day I don't where the heart the Hat of a husband, a father and, advocate, it's a patient I start, it that way I ended, that way and it's, something I live with but as an advocate, all, I have seen in the past few years it's positive, actions, coming from the Lyme community, because, there's the opportunity, to hear two sides of a story there's, an opportunity to work together as, Kristin, said yesterday, let's, hit the reset button let's, start, something, new there, is an opportunity, to, have a change if we, redefine it, we redefine, it but, for patients suffering. Ill going, through the changes, I, have a device in my chest I've lost my knees I've lost my shoulders, I had Bell's palsy I had all the symptoms that, many here have suffered worse than me but, I am here today there, is that fighting, chance to do something and I applaud you all for being in the, working group and I just hope that everyone, around the country sees. This as something that's gonna change 2 sides 3 SOT whatever it is is gonna come together listen. And help each other for the patient, my, treatment has, not been the, normal treatment the normal treatments, did not function properly for, me didn't work the, unorthodox way, that, we have worked it together has, made a difference that, doesn't mean it's gonna fit patient, a B and C but, it fit me.

I'm. Sure I think you're talking and I want to keep it that way I wasn't able to make it I thank you all for the opportunity I applaud you for what you do and if, there's anything I could ever do to help anyone, I would I would love the opportunity and, again, everyone, keep, fighting the fight we're all here together there, will be a change thank, you thank you very much. That's. A wonderful note attend, the public comments, on we're. Going to wrap things up here. So. Yeah just on the the comments, there I wanted, to reflect on a couple themes that we heard one. Is such, powerful, powerful. Stories, thank you for having the courage to publicly. Share and. Constructively. Offer solutions, a lot, of the themes through those individual. Stories, is, the mental health the suicide, aspects, the invisible, pain, so. Thinking, we could reset, before we go into the Charter the working, group by taking 60 seconds to, just reflect on one. Those people who can't physically be here with us but, who were holding the space for and we are working for and also. Our hope, well we've reflected on yesterday, and what we want out of this if. We could go back to what we want and where we're going with this reset, and with this working group in sixty Seconds before we go to the Charter I'd, appreciate that. Thank, you everyone, and John. Will close it out before we break and then we'll get to the real work I just. Want to end by saying that, the. Public comments are important part of this and that's why we've, devoted. Appropriately. Time. For this I want to ensure you, that is the working group chair that we're, listening and that it makes a difference to have, had, the courage to come today we're, listening. We're hearing what you're saying and it's important part of what we'll be doing is incorporating, your comments, so I I really want to emphasize that that this wasn't, just an exercise it was part of us hearing you and we, will. Be taking it into the way we work, as a group so thank you very much we'll, go to break now. US. Department, of Health and Human Services produced. At taxpayer, expense.

2017-12-30 09:00

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