Introducing HIV Outcomes Romania

On World AIDS Day 2024, the Romanian initiative worked with the Advocacy Working Group of the National Cross-Institutional Council to draft an advocacy letter on the urgent need of to allocate appropriate budget for HIV prevention and control.

HIV Outcomes Romania co-organised a policy event on World AIDS Day in partnership with UNOPA and other Key Opinion Leaders and key HIV community representatives. The event highlighted the initiative’s study results on QoL for people living with HIV and promoted a Joint Call to Action on HIV Undetectable=HIV Untransmittable (U=U), in collaboration with the Romanian Society for Communicable Diseases and HIV/AIDS. 

The Romanian initiative published its 4^th quarterly newsletter, outlining its key activities and achievements in the second half of 2024.

HIV Outcomes Romania’s Co-Chair, Dr. Mariana Mardărescu, submitted a scientific abstract on the initiative’s study results on the QoL of people living with HIV, which will be presented at the 2025 HIV & Women International Conference.

The Romanian Secretariat participated at a national-level meeting with Ministry of Health representatives, the HIV care network, and HIV community to discuss key updates on HIV medical care and budgeting.

HIV Outcomes Romania continued work on the allocation of budget to Romania’s National HIV Strategy’s (RNHS) implementation, attending a working group meeting with NGOs hosted by the National HIV Monitoring Cross-institutional Council (under Ministry of Health).

MEP Vytenis Andriukaitis presented a keynote speech on improving HRQoL was presented by video message to inter/national key opinion leaders at the Romanian Parliament during the National Conference on Infectious Diseases.

HIV Outcomes Romania leveraged the initiative’s study results on quality of life of people living with HIV with key opinion leaders, clinicians, community representatives, NGOs and industry, at the national Congress on Infectious Diseases, presenting at two debates on health-related quality of life.

HIV Outcomes Romania helped draft three Joint Calls to Action on HRQoL (on HIV Undetectable=Untrasmittable & tackling HIV related stigma in healthcare settings; on comorbidities management; on HIV prevention in vertical transmission), together with the Romanian Society for Communicable Diseases and HIV/AIDS. The advocacy documents will continue to be shared with medical societies, HIV community, authorities.

At a community workshop on HIV monitoring with the national HIV care network and authorities, the Romanian Secretariat shared its views of HRQoL and the need to urgently implement the Romanian National Strategy on HIV.

HIV Outcomes Romania continued advocating with policymakers at the National HIV Monitoring Cross-institutional Council (under the Ministry of Health) to discuss the budget allocated to the implementation of Romania’s national HIV strategy.
 
The Romanian initiative’s Co-Chair, Dr Mariana Mardarescu, leveraged the results of a study on QoL of people living with HIV at a national scientific conference led by key opinion leaders.

The initiative collaborated with the office of MEP Vytenis Andriukaitis to prepare a video message on  health-related quality of life (HRQoL), which was shared at with inter/national key opinion leaders at the Romanian National Conference on Infectious Diseases.
HIV Outcomes Romania published its third quarterly newsletter, highlighting members’ action priorities on HRQoL at the national level.

HIV Outcomes Romania collaborated with the European initiative in jointly advocating with the Romanian Health Minister to collaborate with the future Polish Presidency of the Council of the EU to prioritise HIV on their agenda.

The Romanian initiative sent a letter to the government urging an amendment to the national budget to implement the national HIV Strategy.

HIV Outcomes Romania attended an online meeting with representatives of the national HIV care network, exchanging views on the agenda of the upcoming National Conference of the National Institute of Communicable Diseases.

HIV Outcomes Romania members contributed to a high-level event organised by the HIV community in Bucharest, at which they promoted policies to achieve better quality of life for people with HIV.

The Romanian initiative continued to collaborate with the Ministry of Health on possible solutions to further develop political support in the EU, in particular to include HIV in the European Commission’s agenda for the next 5 years.

The Romanian Secretariat attended a strategic meeting of the European Steering Group in Brussels, presenting the Romanian initiative’s achievements and further plans.

HIV Outcomes Romania launched its second quarterly newsletter for 2024, highlighting the opinions and policy engagements promoting better health-related quality of life of people living with HIV

HIV Outcomes Romania collaborated with the community & Key Opinion Leaders for a roundtable discussion on policy changes to support the improvement of quality of life of people living with HIV, particularly in regard to affording them more financial allowances.
HIV Outcomes Romania launched its national blog, promoting members’ activities and views.

The Romanian Steering Group held a strategic meeting to discuss advocacy opportunities to promote HIV as a priority on the national and European political agenda, as well as to promote the HIV Undetectable=Untransmittable (U=U) message.

HIV Outcomes Romania co-chairs leveraged initiative’s study’s results in two international events. They hosted as co-organisers an international event at the HIV International Academy in Bucharest a two days training on HIV integrated care with the NURSETRI representatives and 100 Romanian nurses network, leveraging our initiatives views on HRQoL.
 
Romanian Secretariat’s representative contributed as a speaker on a dedicated panel on Equity in Healthcare, along with national KOL and authorities, in a community led event on policies on communicable diseases. The outcome of the meeting was a Joint call to action on national authorities for better healthcare and QoL.
 
The Romanian initiative contributed in co-organising with patient organisations a policy event at the Senate’s house on promoting and safeguarding the quality of life for cohort members; the event was postponed, given the upcoming elections context.

HIV Outcomes Romania’ s members contributed in developing the European Compendium of good practices in HIV.

HIV Outcomes Romania and the European initiative engaged with the MoH to support HIV as a top priority on the European political agenda.

HIV Outcomes Romania shared with the MoH  its study results on QoL for people with HIV and presented its views for better monitoring and implementation of the Romanian National HIV Strategy 2022-2030, in a stakeholders consultation.

“I vote for better healthcare”-Targeting the upcoming national political elections, the Romanian initiative jointly advocated for better policies and financing in healthcare, together with national NGOs, KOLs,  patient representatives and industry.

The Romanian initiative’s study and its policy recommendations for better QoL for people living with HIV were shared with KOLs in 2 important HIV conferences: HIV& Women 2024 in Washington and National Conference for Infectious Diseases in Craiova.

The Romanian Secretariat participated at the first HIV Outcomes Strategic Meeting in Brussels.

The Romanian initiative presented its views on better HRQoL for people with HIV in two round table discussions with the Ministry of Health, National Institute for Public Health, NGOs and administrative authorities on the implementation of the National HIV Strategy with increased funding.

HIV Outcomes Romania partnered with HIV& Women 2024 organisers, as a non-financial endorser, with the support of the European initiative.

The Romanian initiative’s policies asks derived from the study on Quality of Life of 1050 people with HIV were presented by the Romanian co-chair dr Mariana Mărdărescu, at an international scientific conference in Novi Sad led by KOLs.

HIV Outcomes Romania continued leveraging the results of its study on the QoL of people living with HIV, developing visual materials for international conferences to be attended by its co-chair.

Exchanges were engaged with organisers of international HIV related scientific events, for partnership on promoting HIV Outcomes Romania’s activities on QoL/HRQoL for people with HIV.

The Romanian Secretariat contributed in developing the Annual Review at European level,  with input on 2023 HIV Outcomes Romania’s accomplishments.

In 2023 HIV Outcomes Romania’s members agreed on the importance of launching a query among members of the communities at risk for HIV infection, to reveal the best ways for implementing PrEP in use at national level. In this respect, a draft of the survey was developed and discussed during a roundtable with the initiative’s NGOs and clinicians.

The Romanian Steering Group adopted its new Work Plan for 2024.

The 4th Romania HIV Outcomes’ newsletter was launched, leveraging initiative’s views, accomplishments and policy recommendations for a better HRQoL/QoL for people with HIV.

HIV Outcomes Romania’s study results on QoL for people living with HIV were presented in submitted abstracts, to be shared by the Romanian co-chair Dr Mariana Mărdărescu, in international scientific events organised by EACS and Academic Medical Education.

HIV Outcomes Romania has continued its advocacy exchanges with MoH and Ministry of Labour, to get implemented the National HIV Strategy and to attain a satisfactory QoL/HRQoL for people with HIV.

The Romanian initiative co-organised with the HIV community representatives and KOLs a high level policy event “WAD Bucharest 2023” , sharing its policy asks on social and healthcare legislation, for improving QoL for people with HIV.

The Romanian initiative’s advocacy efforts and its policy recommendations on improving QoL for people with HIV were promoted by a national health policies magazine Viața Medicală, on the WAD 2023 occasion.

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. 

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.   

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). 

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. 

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. 

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.

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.

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.

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.

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.

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.

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.

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.

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.

A 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.

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.

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. 

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.

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.

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.

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).

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.

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

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.

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. 

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.

A 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.  

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).

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. 

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.

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

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

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