18 feb

Wetten V.S.

WET H.R.789 gestemd mei 2015


Press Release Congressman Chris Gibson

This is outstanding news for Upstate New York and for the more than 300,000 Americans suffering from Lyme disease and a host of related illnesses like babesiosis, ehrlichiosis, and Rocky Mountain spotted fever”. “Ticks are an increasingly dangerous presence in our communities, causing a litany of health problems that often go untreated or undetected. This situation is exacerbated by the dated treatment guidelines in use by the Centers for Disease Control and a lack of coordinated research by federal regulators, both of which have kept patients waiting for treatments and left them in the lurch financially when insurers refuse to pay for healthcare costs. Our bill will bring relief to a long-suffering population, especially our chronic Lyme sufferers.

WET H.R. 4701 gestemd eind 2014


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Not later than 3 years after the date of enactment of this section, and every 5 years thereafter, the Secretary shall submit to the Congress a strategic plan, informed by the most recent summary under section 399OO-1(b)(1), for the conduct and support of Lyme disease and tick-borne disease research, including

(1) proposed budgetary requirements;
(2) a plan for improving outcomes of Lyme disease and
other tick-borne diseases, including progress related to
chronic or persistent symptoms and chronic or persistent
infection and co-infections;
(3) a plan for improving diagnosis, treatment, and prevention;
(4) appropriate benchmarks to measure progress on
achieving the improvements described in paragraphs (2) and (3);
(5) a plan to disseminate each summary under section
399OO-1(b)(1) and other relevant information developed by the
Working Group to the public, including health care providers,
public health departments, and other relevant medical




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  1. “Long-term antibiotic therapy” means the administration of oral, intramuscular, or intravenous antibiotics singly or in combination, for such periods of time as decided by the attending physician.

  2. “Lyme disease” means the clinical diagnosis of a patient by a physician licensed under 26 V.S.A. chapter 23 of the presence of signs or symptoms compatible with acute infection with Borrelia burgdorferi; late stage, persistent, or chronic infection with Borrelia burgdorferi; complications related to coinfections; or with such other strains of Borrelia that are identified or recognized by the Centers for Disease Control and Prevention (CDC) as a cause of disease. “Lyme disease” shall also mean either an infection that meets the surveillance criteria set forth by the CDC or a clinical diagnosis of Lyme disease that does not meet the surveillance criteria but presents other acute and chronic signs or symptoms of Lyme disease as determined by a physician. The clinical diagnosis shall be based on knowledge obtained through medical history and physical examination alone or in conjunction with testing that provides supportive data for the clinical diagnosis.



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Any policy, contract, agreement, plan or certificate of insurance issued, delivered or renewed within the commonwealth that provides medical expense coverage shall provide coverage for diagnostic testing and long-term antibiotic treatment of chronic Lyme disease when determined to be medically necessary and ordered by a physician after making a thorough evaluation of the patient’s symptoms, diagnostic test results and response to treatment. Treatment otherwise eligible for benefits pursuant to this section shall not be denied solely because such treatment may be characterized as unproven, experimental, or investigational in nature.



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Section one of the bill amends Section 230 of the public health law by adding a new subdivision 9-b to ensure that neither the board for professional medical conduct nor the office of professional medical conduct shall identify, charge, or cause a report made to the director of such office to be investigated based solely upon the recommendation or provision of a treatment modality by a licensee that is not universally accepted by the medical profession, including but not limited to, varying modalities used in the treatment of Lyme disease and other tick-borne diseases.



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Publicly accessible website.  The Maine Center for Disease Control and Prevention shall maintain a publicly accessible website to provide public awareness and education on Lyme disease and other tick-borne illnesses. The website must provide information on the prevention, diagnosis and different alternatives for treatment of Lyme disease and other tick-borne illnesses for use by health care providers and the public, including, but not limited to, links to resources made available and recommended by the United States Department of Health and Human Services and an international nonprofit multidisciplinary medical society.

Sec. 2. Maine Center for Disease Control and Prevention; alternatives for the treatment of Lyme disease. The Department of Health and Human Services, Maine Center for Disease Control and Prevention shall include on the publicly accessible website established pursuant to the Maine Revised Statutes, Title 22, section 1645, subsection 3 information, including links to websites, about treatment guidelines recommended by the Infectious Diseases Society of America and the International Lyme and Associated Diseases Society. The center shall work with health care professionals to inform patients about different alternatives for the treatment of Lyme disease.


This bill directs the Maine Center for Disease Control and Prevention to include on its publicly accessible website information about different alternatives for the treatment of Lyme disease. The bill also requires the center to include information about treatment guidelines recommended by the Infectious Diseases Society of America, which represents physicians, scientists and other health care professionals who specialize in infectious diseases, and the International Lyme and Associated Diseases Society, an international nonprofit multidisciplinary medical society. The bill directs the center to work with health care professionals to inform patients about different alternatives for the treatment of Lyme disease.


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18 feb

Wet Canada

BILL C-442 gestemd eind 2014


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Whereas recent research further demonstrates the persistence of Borrelia spirochetes after antibiotic treatment that follows the guidelines used in Canada (Embers et al., 2012) and indicates that current serology does not adequately describe the diversity of Borrelia bacteria existing in Canada and that the general understanding of, and practices for dealing with, Lyme disease are no longer sufficient or in line with emerging evidence of how the disease operates (Ogden et al., 2011);

Whereas the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness;

And whereas the 2010 report prepared for the Provincial Health Services Authority of British Columbia entitled Chronic Lyme Disease in British Columbia, A Review of Strategic and Policy Issues concluded that current diagnostic testing for Lyme disease is inadequate and advocated placing the highest priority on the development of reliable diagnostic testing for the disease and on educating physicians so they can recognize the symptoms of Lyme disease and treat patients in a manner that is medically appropriate, including treatment with antibiotics as justified

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18 feb

Wetten Europese Unie

In 2008 besliste de EU informatie over zeldzame ziektes in de Orphanet database op te slaan.

Dissemination of knowledge and information on rare diseases

One key element for improving diagnosis and care in the field of rare diseases is to provide and disseminate accurate information in a format adapted to the needs of professionals and of affected persons. The establishment of an EU dynamic inventory of rare diseases will contribute to tackle some of the main causes of neglecting the issue of rare diseases including the ignorance of which diseases are rare. The Commission will ensure that this information continues to be available at European level, building in particular on the Orphanet database, supported through Community programmes.

Hier staan 2 verwijzingen naar de ziekte van Lyme:

  1. 91546 Lyme borreliosis
  2. 91546 Lyme disease

Orphanet beschrijft de ziekte verder in de “Encyclopédie Orphanet Grand Public” onder de titel “Maladie de Lyme” met onder meer volgende citaten:

La phase tertiaire

La phase tertiaire ou tardive de la maladie de Lyme correspond à une évolution chronique des symptômes. Cette situation est moins fréquente, s’observe en l’absence de traitement après quelques mois à quelques années. Les principales manifestations de cette phase sont cutanées, articulaires et nerveuses.

Les manifestations cutanées

Les manifestations cutanées de la phase tardive de la maladie de Lyme sont caractérisées par l’acrodermite chronique atrophiante, également appelée maladie de Pick-Herxheimer. Cette maladie apparaît plusieurs années après la contamination et se traduit par une lé- sion violacée et gonflé qui se situe principalement sur le dos des mains, aux coudes, aux chevilles, aux genoux, ou sur un segment du membre (jambe)…

Il évolue ensuite vers une atrophie cutanée : la peau devient mince et fripée et laisse apercevoir les veines en transparence.

Les manifestations articulaires

Dans la phase tardive, l’arthrite devient chronique et touche principalement les grosses articulations. Elle occasionne des douleurs durables avec des anomalies à la radiographie.

Les manifestations nerveuses

Elles peuvent donner une atteinte du cerveau (encéphalopathie chronique) avec des troubles psychiatriques ou neurologiques divers.

En bij “Le Traitement” staat te lezen:

Dans les phases tardives, les céphalosporines dites de 3ème génération peuvent être uti- lisées, mais doivent être administrées par voie intraveineuse (patients hospitalisés). Ils permettent l’atténuation voire la disparition des symptômes.

Ces antibiotiques sont habituellement bien tolérés mais peuvent parfois être à l’origine, dans de rares cas, d’allergies.

Les macrolides ou tétracyclines peuvent également être utilisés, notamment en cas d’aller- gies aux précédents antibiotiques. Ils présentent cependant certains effets secondaires : problèmes digestifs, problèmes de sensibilité accrue au soleil (photosensibilité), interactions médicamenteuses et sont, pour certains, contre-indiqués chez les femmes enceintes et les enfants.

Les arthrites chroniques qui ne sont pas soulagées par le traitement antibiotique, peuvent être traitées par synoviorthèse (traitement d’une affection inflammatoire articulaire, à l’aide d’une injection de produit faite dans l’articulation) ou synovectomie (enlèvement chirurgical de la synoviale (membrane qui tapisse l’intérieur des articulations) au niveau des articulations atteintes).

Orphanet wordt geleid door een Europees consortium van zo’n 40 landen (waaronder België), gecoördineerd door het Franse team. De nationale teams zijn verantwoordelijk voor het verzamelen van informatie over gespecialiseerde ziekenhuizen, medische laboratoria, lopende onderzoeken en patiëntenorganisaties in hun land. Alle Orphanet-teams leven hetzelfde kwaliteitshandvest na. (of dat zou zo moeten)…

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