Sixty-two per cent of kidney disease patient groups represent patient interests to regulators. Engagement centres on HTA and reimbursement reviews (41%), while fair medicine pricing and formulary inclusion are the leading advocacy priorities (both 18%).
62% of respondents from Kidney diseases ‘Regularly’ or ‘Sometimes’ represent patient interests to drug regulators
Patient groups representing each Kidney diseases sub-type
39 patient groups across 1 sub-types
interactions
Consumer feedback to PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], government consultations, and other organisations on behalf of those with kidney disease.
Consumer feedback to PBAC, MSAC, government consultations, and other organizations on behalf of those with kidney disease.
National kidney patient group, Australia
interactions
We have held multiple externally led patient-focused drug development (EL-PFDD [Externally-Led Patient-Focused Drug Development]) meetings with the FDA [Food and Drug Administration]. We invite regulators to all our scientific workshops. We educate patients and facilitate meetings with regulators on an ongoing basis.
1. We have held multiple externally led patient focus drug development (EL-PFDD) with the FDA. 2. We invite regulators to all our scientific workshops. 3. We work closely with the FDA and other drug agencies, like EMA and PDMA, to look at endpoints for drug trials, or how to improve drug trials to benefit sponsors and patients. 4. We educate patients and facilitate meetings with regulators on an ongoing basis. 5. Our government relations team responds to comment letters and regularly talks with CMS to ensure best outcomes.
National kidney patient group, USA
actions & advocacy
We advocate for non-automatic substitution legislation [a pharmacist cannot legally replace your prescribed medication with a generic or alternative brand without the express, written authorisation of your prescribing doctor] and provide submit formal opinions in medicine procurement tenders, drawing on demonstrated quality, safety, and efficacy.
Luchamos por leyes de no sustitución automática, e intervenimos con opinión en licitaciones de medicamentos, basándonos en calidad, seguridad y eficacia comprobada.
National kidney patient group, Panama
actions & advocacy
Practically one issue per month at least. Examples: transport of dialysis patients, introduction of obligatory white fillings in dental medicine, law on quality of healthcare.
Practically one issue per month at least. Examples: transport of dialysis patients, introduction of obligatory white fillings in dental medicine, law on quality of healthcare.
National kidney patient group, Slovenia
The percentages below highlight how the 17 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
12 mentions
7 mentions
4 mentions
1 mention
3 mentions
2 mentions
1 mention
3 mentions
3 mentions
3 mentions
2 mentions
1 mention
2 mentions
2 mentions
1 mention
1 mention
actions & advocacy
7 mentions
3 mentions
3 mentions
1 mention
3 mentions
2 mentions
1 mention
2 mentions
2 mentions
1 mention
1 mention
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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
