Orphan diseases


The Coalition of Healthcare Rights Organizations decided this year to make the issue of orphan diseases one of its primary causes for action. As part of this initiative, a forum regarding this issue, led by the Society for Patients Rights and composed of other non-profit organizations, was established. The forum will act continuously to advance the issue, with emphasis on the following: increasing public awareness regarding early detection and prevention; the establishment of designated centers for treatment of the diseases; exemption from co-payments for patients; and advancement of the Orphan Diseases Law.

 

Click here to view a full article (in Hebrew) on the topic, which was published on the Walla website on February 28, 2011.

 

The Coalition of Healthcare Rights Organizations wrote a letter to the Ministry of Health regarding the issue of rare diseases. The following are the letter’s main points:

  • Prevention – The expansion of neonatal testing to include additional rare diseases and act to increase the activities and initiatives for additional projects by the Ministry and in coordination with others, in order to increase public awareness and expand early detection and prevention.  In addition, the rights of family members of those with orphan diseases must be expanded in order pay for genetic testing, pre-natal testing and PGD processes (pre- implantation + in vitro fertilization testing).
  • Treatment of Patients in Specialty Clinics – The establishment of designated centers which are not connected to any specific health plan (kupat cholim), and which specialize in the treatment of each orphan disease.
  • Exemption from Co-Payments – To add the orphan diseases to the lists of diseases which are entitled to an exemption.
  • Health Plan Payment Arrangement – To advance the Orphan Diseases Law which, among other things, refers to health plan budgets according to the number of patients with each disease, as is the accepted practice for serious illnesses.
  • Centralized Records Database – The appointment of someone in the Ministry of Health to compile all data regarding rare diseases.

    Rights for Receiving Medical Services
  1. The Health Basket – The expansion of the services in the basket available to these patients to be similar to that for those with somatic diseases, including respiratory physical therapy treatments.
  2. Hospice Code for the Young – The establishment of designated hospital wards to specialize in the treatment of patients who have reached end and hospice stages.
  3. Family Support and Self-Help Groups – The families of the ill are faced with a difficult situation for a long period of time and there is currently no support system provided by the health plans or the Ministry of Health.
  • Research – It is important to designate and prioritize a budget for research regarding prevention and treatment of rare diseases.
  • National Insurance (Bituach Leumi) Rights – Someone who is ill with a rare disease and contacts the National Insurance Institute in order to receive his/her rights finds him/herself in a situation where the disease is not recognized according to the ailments listing. For each disease, a section should be found in the listing which matches the patient’s conditions for every orphan disease.
  • Specific Requests to the Ministry of Health
  1. Appointment of a someone responsible for orphan diseases.
  2. Advancement of the Rare Diseases Law
  3. Advancement of the issues detailed in this document

 

On May 02, 2011, the Coalition of Healthcare Rights Organizations wrote a letter to the Ministry of Health requesting an exemption for orphan diseases from co-payments for medicines and doctor visits as is the accepted practice for serious diseases. Click here to view a document detailing all of the relevant diseases, as well as specific organizations and contact people who can provide assistance for each unique disease and those affected by it (in Hebrew).  

The Coalition of Healthcare Rights Organizations wrote a letter to the Ministry of Health regarding the issue of rare diseases. The following are the letter’s main points:

  • Additional Expenses for Patient Treatment –  It is important to receive an exemption from medicine co-payments and doctor/medical  visits in order to decrease the high expenses incurred by the families for patient treatment.
  • Expansion of the Health Basket for those with Orphan Diseases  – While it is possible that some of the expenses that are not currently included in the basket may be added to it, it is usually difficult for small non-profit organizations, with limited resources and know-how, to submit requests for additions to the health basket.  It is important that the Ministry of Health defines one person to be responsible for the issue and to assist the non-profit organizations with a request to be submitted to the committee responsible for the contents of the health basket.


 

 

 

 

  

Translated by The Shira Pransky Project