Of the 102 HIV patient groups, 24% represent patient interests to drug regulators. The most common engagement is through governmental advisory bodies (25%), followed by meetings with policymakers/regulators (21%). Advocacy priorities vary between patient groups.
24% of respondents from HIV ‘Regularly’ or ‘Sometimes’ represent patient interests to drug regulators
Patient groups representing each HIV sub-type
102 patient groups across 5 sub-types
interactions
We hold seats on the ONGs [Organizações Não Governamentais – Non-Governmental Organisations] AIDS [Acquired immunodeficiency syndrome] Forum of the State of São Paulo, the Municipal Health Secretariat of São Paulo–SP [State of São Paulo], the CTA [Centro de Testagem e Aconselhamento – Testing and Counselling Centre]-Pirituba Management Council, the Paulistano Movement in the Fight Against AIDS, and the Human Rights Council of the State Secretariat of Justice – SP[State of São Paulo].
O PBMQ possui assento no Fórum de ONGs Aids do Estado de São Paulo, Secretaria Municipal de Saúde de São Paulo-SP, Conselho Gestor CTA-Pirituba, Movimento Paulistano de Luta contra a Aids, Conselho de Direitos Humanos da Secretaria Estadual de Justiça - SP.
National HIV patient group, Brazil
interactions
We actively participate in meetings with the Ministry of Health, including with the HIV Control Division — covering viral hepatitis, tuberculosis, and other STIs [ITS, Infecciones de Transmisión Sexual – Sexually Transmitted Infections] — as well as with the Directorate-General for Pharmacy, among others.
Participamos activamente en reuniones con el Ministerio de Sanidad: la división del Control del VIH, hepatitis virales, tuberculosis y otras ITS, Dirección General de Farmacia, etc.
National HIV patient group, Spain
actions & advocacy
We have organised vaccine awareness marches and submitted formal written requests to the Kōrōshō [ – Ministry of Health, Labour and Welfare].
ワクチンパレードを行い、厚労省に要望書を提出している。
National infectious-diseases patient group, Japan
actions & advocacy
ETSI [Ending Transmission of Sexual Infections] Health Clinic represents the interests of patients—particularly those impacted by HIV, LGBTQ+ individuals, and underserved communities—by advocating for affordable access to life-saving medications.
ETSI Health Clinic represents the interests of patients—particularly those impacted by HIV, LGBTQ+ individuals, and underserved communities—by advocating for affordable access to life-saving medications and healthcare services. Through its participation in programs such as the 340B Drug Pricing Program, ETSI works to ensure that low-income and uninsured patients have access to reduced-cost prescription medications, including HIV treatment and prevention medications like PrEP. ETSI Health Clinic collaborates with pharmacy partners and public health systems to highlight the real-world impact that medication costs have on patients living with HIV and those at risk. By documenting patient barriers to medication access, the clinic helps inform healthcare partners and policymakers about the financial and systemic challenges patients face. As a transgender-led healthcare organization, ETSI also brings the perspective of historically marginalized communities into healthcare discussions. The clinic advocates for policies that protect medication affordability, expand HIV prevention services, and strengthen programs that reduce the cost of prescription drugs for safety-net providers. Through patient care, community engagement, and participation in public health programs, ETSI Health Clinic ensures that the voices and needs of vulnerable patients are represented in conversations about medication access and healthcare equity.
Regional HIV patient group, USA
The percentages below highlight how the 24 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
5 mentions
3 mentions
3 mentions
1 mention
9 mentions
6 mentions
2 mentions
1 mention
3 mentions
1 mention
1 mention
1 mention
1 mention
1 mention
actions & advocacy
6 mentions
2 mentions
1 mention
1 mention
1 mention
1 mention
3 mentions
1 mention
1 mention
1 mention
2 mentions
2 mentions
2 mentions
2 mentions
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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
