Policy Analysis of Accessibility for RARE and ULTRA-RARE Diseases at MENA Region.

Author(s)

Abotaleb A
World Health Organization, cairo, C, Egypt

OBJECTIVES

Rare and ultra-rare diseases treatments & services have their differences from regular treatments for the following.

  • Nature of definitions , Diagnosis and investigations methods for that diseases.
  • Treatment protocols.
  • Targeted patients .
  • Technology assessment for that treatments and services .
  • Funding and financing for reimbursement strategies.
The objectives of the research is to analyze and defines factors affecting accessibility for rare and ultra-rare diseases at MENA region.

Methods

Integration between A systematic literature reviews & analysis for Local Access policies, treatment & technology assessment guidelines. Of rare and ultra-rare diseases Interviews was conducted with Key stake holders for health system in countries as ( Egypt , Algeria , Turkey , Jordan , UAE , KSA , MOROCCO )those stock holders included physicians, clinical pharmacist, Representors of patient's groups, payers, service providers using questionnaire as a survey tool for interview. Public expenditures descriptive analysis was conducted. Plus financing schemes for those type of diseases.

Results

The following elements of results are playing major roles for garneting accessibility for rare and ultra-rare products at MENA region

Element

Percentage of influence
awareness for the diseases for different stake holders

 77%
Developing local guidelines for technology assessment for rare and ultra-rare diseases

 66%
Developing local treatment guidelines

 64%
Developing innovative methods for financing.

 70%
Developing local platforms and task forces.

 60%
Patients awareness and educations

 33%

Results

Developing up capacities & capabilities projects to cover the gaps and achieving the following

  • Enhancement of the diseases awareness for different stakeholders.
  • Integration between technology assessment and treatment guidelines.
  • Patient’s advocacy & innovative methods for financing.
  • Local platforms to enhance effective communications for different stake holders.

Conference/Value in Health Info

2020-11, ISPOR Europe 2020, Milan, Italy

Value in Health, Volume 23, Issue S2 (December 2020)

Code

PRO12

Topic

Health Policy & Regulatory

Topic Subcategory

Reimbursement & Access Policy

Disease

Rare and Orphan Diseases

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