Introducing HIV Outcomes Romania

ROMANIAN | ENGLISH

Members

HIV Outcomes Romania consists of the following members:

  • Prof. Adrian Streinu-Cercel, Senate of Romania
  • Ana Maria Schweitzer, Baylor Black Sea Foundation
  • Daniel Scoarta, National Union of Organisations of People living with HIV/AIDS (UNOPA)
  • Daniela Biris, Timisoara Regional Center for HIV Evaluation& Monitoring
  • Dr. Florentina Dumitrescu, Craiova Regional Center for HIV Evaluation & Monitoring
  • Ioan Petre, Coalition of Patients Organisations with Chronic Diseases (COPAC)
  • Iulian Petre, National Union of Organisations of People affected by HIV/AIDS (UNOPA)
  • Dr. Mariana Mărdărescu, National Institute of Infectious Diseases “Prof. Dr. Matei Balş”
  • Dr. Mariuca Apopei, Elpharma Romania (on behalf of ViiV Healthcare)
  • Dr. Mioara Predescu, Romanian HIV Center
  • Nicoleta Dascălu, Romanian AIDS Association (ARAS)
  • Dr. Roxana-Carmen Cernat, Constanta Regional Center for HIV Evaluation & Monitoring
  • Dr. Teodora Moisil, Timisoara Regional Center for HIV Evaluation & Monitoring
  • Tudor Ciubotaru, Gilead Sciences SRL Romania (GSR)

Activities & Milestones

HIV Outcomes Romania was launched in 2019, with the aim to road-test the HIV Outcomes recommendations and vision to improve the health-related quality of life of people living with HIV in a unique context. Romania has in fact a large group of people, who were infected with HIV as children at hospitals in the late 1980s-early 1990s. Those people have been living with HIV for approximately 30 years. Road-testing the HIV Outcomes recommendations in Romania will help make an impact in a country with considerable unmet health needs and a challenging policy and budgetary environment. 

2023
  • November 2023

    The Romanian initiative provided inputut in two consultations with the Parliament and the Ministry of Labour on a social security legislative recast, presenting its views on the need to improve QoL for people with HIV.  

    A joint advocacy letter on QoL was sent by the initiative to all relevant national authorities, being supported by 12 HIV national stakeholders (NGOs and authorities). The document, which was leveraged through online and media outlets, urges the continuation of financial support for 7000 survivors of the Romanian cohort. 

    Co-chair Dr Mariana Mărdărescu presented HIV Outcomes Romania’s study results on QoL for people living with HIV, at international scientific events organised.  

    Prof Dr Oana Sandulescu, the representative of the National institute for  Communicable Diseases “Prof Dr Matei Bals” has shared as a speaker the importance of using PROMs in HIV care, at the World Days Day event in the European Parliament. 

  • October 2023

    The Romanian initiative has continued its advocacy efforts with MoH, to have launched the activity of the cross-sectoral Committee for HIV control and for having implemented the National HIV Strategy.   

    Co-chair Dr Mariana Mardarescu successful attended the EACS Conference in Warssaw, sharing HIV Outcomes Study’s findings an recommendations for engancing quality of life for people living with HIV. 

    HIV Outcomes Romania’s study results on QoL for people living with HIV and its derived Policy Asks  were promoted at international policy events organized by KOLs.   

  • September 2023

    HIV Outcomes Romania launched the conclusion of the scientific study developed on 1050 people living with HIV and its emerging Policy Recommendations on improving their QoL, in a high level event at the Romanian Senate. The event was organized in a pioneering format, as partnership with the Scientific Society for Infectious Diseases, in the frame of the Scientific Days of the National Institute for Communicable Diseases 

    The Romanian Secretariat continued to advocate with Ministry of health and KoLs on HRQoL.

    The Romanian Policy Asks on Improving QoL for those living with HIV were translated into English for dissemination. 

    An abstract of HIV Outcomes Romania’s study findings on what QoL means for those living with HIV and how we should act for improving their overall wellbeing and health, was submitted  by the co-chairs and accepted at the  European AIDS Conference (to take place in November in Warsaw). 

  • July 2023

    The Romanian initiative engaged with the Ministry of Health representatives, the National HIV Care metwork and NGOs in a round table discussion, on the urgent need to implement Romanian Nationa Strategy actions on HIV testing, control, National Guide on HIV care (ECDC’s guide translated in Romanian) and on combating HIV related stigma.  

    The final conclusions and policy recommendation of the study on the Quality of Life of people with HIV, were prepared. The results will be shared in a high level event in September, at the Romanian Parliament. 

    The European HIV Outcomes Policy Asks: Enhancing long-term health and well-being among people living with HIV, were translated into Romanian and tailored to the national environment 
    The second HIV Outcomes Romania’s Newsletter was disseminated and well received by the HIV stakeholders. 

  • June 2023

    HIV Outcomes Romania advocated for appropriate budgeting and the urgent implementation of the Romanian National HIV Strategy, focussing on: HIV testing, control and comorbidity treatment in two scientific events led by HIV community and key-opinion leaders (KOLs). 
    In a round table event,  HIV Outcomes Romania co-partnered with the Senate’s Health Committee and the national HIV care representatives, an HIV Experts Joint Declaration on the urgent need to implement Romanian HIV Strategy. The document is calling on MoH and authorities to action on HIV prevention and control, for a multidisciplinary approach to care , being supported by a  Senate’s Press Release
    The Romanian initiative continued to engage with the Ministry of Health, asking for institutional support for  broadcasting the HIV Undetectable = HIV Untransmittable message at national level. 

  • May 2023

    The HIV Outcomes Romanian Secretariat continued to work on developing final recommendations based on findings of the national study on quality of life for people with HIV.

    HIV Outcomes Romania’s member Daniela Biris and co-chair Dr Mariana Maradarescu, called to urgently implement the Romanian HIV Strategy in events gathering key opinion leaders.

    On May 17, HIV Outcomes Romania co-chair Dr Mariana Mardarescu participated in the HIV Outcomes Roundtable on HIV stigma and discrimination in Spain.

    HIV Outcomes Romania’s experts outreached to the Ministry of Health, recommending to secure funding for the implementation of the National HIV Strategy, with a particular focus on HIV testing, HIV control and management of comorbidities.

  • April 2023

    HIV Outcomes Romania co-chairs organised a panel discussion with regional HIV care centres to validate and eliminate biases in the final results on the study on quality of life for people living with HIV in Romania.

    HIV Outcomes Romania Steering Group discussed advocacy for financing and implementing the Romanian National HIV Strategy 2022-2030.

    The HIV Outcomes Romanian Secretariat published its first newsletter, highlighting its key achievements and objectives at national and European levels.

    The HIV Outcomes Romanian Secretariat successfully provided input to the Romanian Healthcare Strategy, released in April. The document now includes increased involvement of HIV community and NGOs in public policies management, and focus on comorbidities treatment and quality of life for people with HIV.

  • March 2023

    Together with several national NGOs, the HIV Outcomes Romanian Secretariat further refined findings from the survey on quality of life of people living with HIV in Romania.

    Ahead of the HIV Outcomes roundtable in May with Spanish authorities, Romanian HIV stakeholders were contacted to identify and communicate best practices in addressing HIV-related stigma and discrimination in healthcare settings.

  • February 2023

    The HIV Outcomes Romanian Secretariat met with the Romanian Ministry of Health and advocated for the inclusion of HRQoL in national HIV policies.

    The HIV Outcomes Romanian Secretariat participated in an operational workshop in Brussels to prepare the HIV Outcomes roundtable in Madrid and present its perspectives for future common actions across HIV Outcomes teams.

  • January 2023

    In 2022, HIV Outcomes Romania initiated a study on the quality of life of people living with HIV. After collecting 1050 survey answers, the Secretariat liaised with national HIV care network representatives and the National Institute for Communicable Diseases to further refine findings and develop policy asks.

2022
  • December 2022

    As a result of our partnership with the Romanian Health Minister and Senate’s Health Committee to advocate for the improvement of HRQoL, our policy asks were included in the Romanian HIV Strategy 2022-2030.

    National expert Dr. Anca Streinu-Cercel delivered a speech on the current successes and challenges in HIV care in Romania during HIV Outcomes’ World AIDS Day event organised at the European Parliament.

    The Secretariat presented the initiative’s activity and policy asks at the Romanian World AIDS Day event at the Romanian National Institute for Communicable Diseases.

    We continued our advocacy , providing input with the initiative’s asks on HRQoL into the National Healthcare Strategy 2022-2030.

    A promotional video on HIV Outcomes Romania members’ activities was produced and launched.

  • November 2022

    We engaged with patient organisations (UNOPA), NGOs and other HIV stakeholders and drafted a  Joint Letter on the importance of swiftly adopting a National HIV Strategy focusing on HRQoL.

    The Romanian Secretariat representative gave a speech on HIV Outcomes Romania’s activity and its policy asks at an international policy event lead by Key Opinion Leaders from the Romanian National Institute for Communicable Diseases.

    The Romanian Secretariat finalised to coordinate data collection- 1049 questionnaires for developing the study on quality of life for people with HIV.

  • October 2022

    HIV Outcomes Romania’s Steering Group approved the initiative’s strategy and Work Plan for 2023.

    Dr. Mioara Predescu, the Head of the Romanian HIV/AIDS Center at the National Institute of Infectious Diseases “Prof. Dr. Matei Balş”, joined HIV Outcomes Romania as a new member.

  • September 2022

    Advocated to include the recommendations on HRQoL in the Romanian National Healthcare Strategy and provided input in the Action Plan for the Romanian National HIV Strategy (RNHS) 2022-2030.

    Following the high-level debate on the RNHS, a Joint Declaration was drafted including policy asks from 70 HIV experts, which included inter alia HIV Outcomes’ perspective on HRQoL. The Joint Declaration was shared with the Romanian Ministry of Health and was reflected in an official Senate’s press release.

    study on Quality of Life of people living with HIV was developed together with the National Institute for Communicable Diseases.

    A Romanian speaker received the invitation for HIV Outcomes’ World AIDS Day event 2022 at the European Parliament in Brussels.

  • July – August 2022

    The high-level event HIV Infection – Where to? The New National Strategy on HIV 2022-2030 was organised at the Senate House in partnership with the Senate’s Health Committee and the Health Minister.

    The Romanian Secretariat shared with the Romanian Health Minister a Joint Statement capturing the initiative’s views on the HIV National Strategy. 

    Engaged with national government representatives to include HIV Outcomes’ recommendations in the Council Recommendation on Long-Term Care.

  • June 2022

    Contributed to the kick-off event of the Action Plan of National Strategy for Sustainable Development 2030 and input was provided to the public consultation on the 2030 HIV National Strategy.

    HIV Outcomes’ policy asks were presented at a national debate organised by the National Union of Organizations of People Affected by HIV/AIDS (UNOPA), a member of the Romanian Steering Group. 

  • May 2022

    Input was provided on the first draft of the HIV Outcomes Policy Asks and contributed to the Policy Asks Workshop.

    Advocacy efforts continued for the inclusion of HRQoL measurements and UNAIDS targets in the 2030 National Healthcare Strategy, as well as to progress on the study of quality of life for people living with HIV.

  • April 2022

    A recommendation on HRQoL was provided at the public consultation on the New National Healthcare Strategy 2022-2030 organised by the Romanian Ministry of Health.  

    The first Operational Workshop of HIV Outcomes Romania was held with the participation of the European Secretariat and other in-country initiatives.

  • March 2022

    Three informative videos were produced and translated into English where the work of HIV Outcomes Romania was captured and published on the HIV Outcomes website, YouTube and LinkedIn

    Intelligence was collected on the needs of Ukrainian refugees living with HIV in refugee camps.

  • January – February 2022

    Input was provided on HRQoL, stigma and discrimination in healthcare settings, and comorbidities management to the Romanian National HIV Action Plan and UN indicators on physical and mental health, in relation to the Sustainable Development Goal 3 (SDG 3), to address discrimination based on sexual orientation and gender identity, on the evaluation report by the Independent Expert of the United Nations High Commissioner for Human Rights (IE SOGI).

2021
  • December 2021

    The Chair of HIV Outcomes Romania, Prof Dr. Adrian Streinu Cercel, participated in the IAS satellite event  Supporting health-related quality of life for people living with HIV: Lessons and learnings from the COVID-19 pandemic”.

    Participated in the virtual roundtable discussion with board members and HIV communities and representatives Nothing about us, without us – Delivering health-related quality of life for people living with HIV which focused on the involvement of people living with HIV in shaping public policies in Romania.

  • November 2021

    The HIV Outcomes Advocacy Toolbox was translated into Romanian and disseminated.

  • October 2021

    Advocated for the inclusion of HRQoL in HIV-related legislation and provided input to the Parliamentary review of the national health and HIV-related legislation.

  • August 2021

    The Undetectable = Untransmissible campaign was launched to raise awareness on HIV. The campaign received institutional support from the National Council for Combating Discrimination to become a message of public interest. 

  • July – December 2021

    Input was provided on the 2030 National Strategy for Sustainable Development calling for the UNAIDS target proposals and national indicators to measure the HRQoL of people living with HIV.

  • May 2021

    study on the quality of life of people living with HIV in Romania was launched. The study aimed to explore the factors that influence the long-term wellbeing and overall quality of life of different population groups living by HIV in Romania.  

  • April – November 2021

    Five new members joined the Romanian Steering Committee; Daniel Scoarta (member of UNOPA), Dr. Teodora Moisil (Regional HIV Treatment Center Timisoara), Ana Maria Schweitzer (Baylor Foundation), Dr. Florentina Dumitrescu (Regional HIV Treatment Center Craiova) and Daniela Biris (Regional HIV Treatment Center Timisoara).

  • February 2021

    The virtual event Improving the well-being and quality of life of people living with HIV by combating stigma and discrimination took place on 22 February 2021. The event was organised as an open forum, with the aim to stimulate a creative exchange among different stakeholders. 

2020
  • March – September 2020

    Bilateral discussions were held with Members of the Romanian Steering Group to discuss key issues, including the impact of COVID-19 pandemic on people living with HIV, caretakers and clinicians. Building on these conversations, the initiative had exchanges with political stakeholders and members of the government on the impact of the COVID 19 pandemic on the access to treatment and management of comorbidities for people living with HIV.

2019
  • October 2019

    The HIV Outcomes Recommendations were translated into Romanian and disseminated nationally. 

  • June 2019

    The HIV Outcomes Romania Steering Group held its first official meeting and approved its first national Work Plan.

  • January 2019

    HIV Outcomes Romania held its kick-off meeting with the participation of the European Steering Group Members and potential Romanian Steering Group Members.

Media

HIV Outcomes Romania policy recommendations on enhancing quality of life for people with HIV

The HIV Outcomes Romania’s policy recommendations on enhancing quality of life for people with HIV (English Version) are available here: https://drive.google.com/file/d/10cBNLzQ2idkmO_-JwqITTS_FjhdkJr38/view?usp=drivesdkPolicy Recommendations 

Romanian Senate reiterates support to fight against HIV further to HIV Outcomes Romania’s call for implementation of national HIV Strategy

Over the course of May and June, HIV Outcomes Romania further advocated in events gathering key opinion leaders for the implementation of the new Romanian HIV Strategy.

Together with the national HIV care network representatives, HIV Outcomes Romania developed a Joint Declaration with policy recommendations for the Romanian HIV Strategy on HIV testing, prevention and control in vulnerable communities and comorbidities management. 

Further to the declaration, the Romanian Senate issued a press release, reaffirming the Senate’s dedication to improving the quality of life of people with HIV.

National Debate on National HIV Strategy’s implementation | Bucharest, 15-18 June 2023

Summer School on the Management of People with HIV | Constanta, 26-28 May 2023

National Conference of Communicable Diseases | Timisoara, 3-5 May 2023

HIV Outcomes Romania | Q1 2023 newsletter

HIV Outcomes Romania | Q2 2023 newsletter

HIV Outcomes Romania | Q3 2023 newsletter

HIV Outcomes Romania | Q4 2023 newsletter

HIV Outcomes Romania | Steering Group Members

Living with HIV | Testimonials

HIV special story in Romania & HIV Outcomes Romania activity | Iulian Petre, UNOPA | Member of HIV Outcomes Romania

HIV Undetectable = Untransmissible | Dr Mariana Mardarescu, INBI | Member of HIV Outcomes Romania

Contact

FIPRA International – HIV Outcomes Romania Secretariat
FIPRA international
Rue de la Loi, 227 – 1040 Brussels
Gregoriana Tudoran
Phone: +32 479 640 960 ; +40 745 944 099
E-Mail: gregoriana.tudoran@hivoutcomes.eu

This initiative is enabled by sponsorship provided by Gilead Sciences and ViiV Healthcare.