Of the 29 blood disorder patient groups, 52% represent patient interests to drug regulators. Engagement is evenly spread: participating in HTA and reimbursement reviews, attending meetings with policymakers/regulators, participating in public hearings and consultations and working within multi-stakeholder networks are each cited by 19%. On advocacy, influencing healthcare policy and legislation, mobilising parliamentarians and political leaders and facilitating equitable access to healthcare are level (19% each).
52% of respondents from Blood disorders ‘Regularly’ or ‘Sometimes’ represent patient interests to drug regulators
Patient groups representing each Blood disorders sub-type
29 patient groups across 7 sub-types
interactions
Through the Luss [Ligue des Usagers des Services de Santé – League of Health Service Users], which brings together several patient associations and has a member sitting on the Drug Reimbursement Committee at the INAMI [Institut National d’Assurance Maladie-Invalidité – National Institute for Health and Disability Insurance].
Par le biais de la Luss (qui regroupe plusieurs associations de patients) qui a un membre qui siège à la Commission de remboursement des médicaments à l'INAMI.
National blood-disorders patient group, Belgium
interactions
Communications with FDA [Food and Drug Administration], participating in public comment sessions.
Communications with FDA, participating in public comment sessions.
National blood-disorders patient group, USA
actions & advocacy
Position statement on the shortage of Hydroxyurea [chemotherapy to treat some blood cancers] within Brazil's public healthcare network for the treatment of these patients.
National blood-disorders patient group, Brazil
actions & advocacy
We provide public comment on new drugs to the FDA. We regularly organize delegations to Capitol Hill to advocate for Medicaid and Medicare support for sickle cell treatment. We advocate with New Jersey legislators for support for sickle cell treatment and services.
We provide public comment on new drugs to the FDA. We regularly organize delegations to Capitol Hill to advocate for Medicaid and Medicare support for sickle cell treatment. We advocate with New Jersey legislators for support for sickle cell treatment and services.
Regional blood-disorders patient group, USA
The percentages below highlight how the 16 patient groups interact with regulators and advocate for patient interests. As respondents may be represented in more than one area, percentages may not total 100%.
interactions
8 mentions
3 mentions
3 mentions
1 mention
1 mention
4 mentions
3 mentions
1 mention
3 mentions
3 mentions
actions & advocacy
6 mentions
3 mentions
3 mentions
4 mentions
3 mentions
1 mention
2 mentions
1 mention
1 mention
GET THE REPORT
Our research covers 2,262 patient groups representing 100 countries and 45 therapy areas. The sample report shows you the depth of analysis for a single country or therapy area. To access any other reports, please get in touch.
Visit patient-view.com to gather more information or email: Alex Wyke, alexwyke@patient-view.com
