Delivered by Sasha Volgina, Global Network of People Living with HIV

Alexandra (Sasha) Volgina, a woman living with HIV and cervical cancer survivor, who is currently the GNP+ program manager and former Europe PCB NGO Delegate (2015-2016), delivered a keynote address for the 47th PCB Thematic Segment.I am 41 years old, 20 years of which I live with HIV. I was born and the majority of my life lived in Russia, being an activist from 2002. In 2012, I moved to Ukraine, where I have started to work on the regional level. I represented Europe region in PCB NGO Delegation for 2015-2016. Currently, I work for GNP+, where among other projects, I am coordinating community engagement into Global Partnership to Eliminate Stigma and Discrimination.

My connections with UNAIDS are quite close, that’s why I will risk sharing my own story today: I am an HIV positive woman, mum of two daughters and I was lucky enough not to die due to cervical cancer a couple of years ago. In the EECA region, the level of screening for cervical cancer is very low. In Ukraine where I lived for 5 years, 48.7% of women were never checked for cervical cancer. In our region, there are no resources and political will for the integration of HIV and cervical cancer. In 2018, Eurasian Women’s Network on AIDS requested statistics from governments of the region on cervical cancer among HIV-positive women. Only one country – Tajikistan – provided it. Recent achievements in EECA are: in Kyrgyzstan, women living with HIV have managed to advocate for cervical cancer to be included into the Global Fund country proposal; in Ukraine, AHF has done HPV vaccination for girls living with HIV. 

The level of awareness among HIV positive women is very low – I myself being an activist, founder and then Executive Director of All Russian Network of Women affected by HIV EVA, – I knew that having HPV wasn’t good for me, and that chances for HIV positive women to develop cervical cancer are higher. But that’s all I knew – I had no idea of what can be done, how it can be prevented. Years of living with HIV in EECA taught me a lot. I have developed a scope of rules: be ready for discrimination manifestations every second; don’t trust the system; don’t go to the doctors outside the AIDS centers – special parallel medical system for HIV positive patient in fact duplicating the one for “normal” people; be super patient; pray; fight for your rights, and you should know better about your health conditions rather than your doctor. Also, the medical system has ignored me, pushed me out, and was designed in a way that was not answering my needs. I have developed these skills and perspectives in order to survive. 

When I moved to Netherlands to work for GNP+, I found out all that skills and rules are not needed anymore: zero stigma and discrimination; the medical system is slow, but it works; doctors are building with patients equal relationships instead of using paternalistic approach; etc.,. I was pretty shocked and honestly suspicious. I started to get letters which were asking me to go for screening for cervical cancer. I knew that it was actually a good idea, but was hesitating – my rules were saying don’t trust the system – go to peers, go to your community, know better than doctors do – to protect yourself. In my world, letters from the medical facility were a threatening sign. I have called one of my peers and friends in Ukraine, googled quite a lot on cervical cancer – got needed info – and went to the screening, right in time – thank god.

I was diagnosed and treated so quickly, that when I was going for surgery, I wasn’t even 100% sure what was going on. The reason I am alive and wasn’t really ill is so unfair: I have moved to the western world where Global Strategy towards eliminating cervical cancer as a global public health problem adopted by World Health Assembly in August 2020 is already implemented. But women with HIV who still live in Ukraine, or live in Africa – where we see the highest burden of the disease – are sentenced to develop cervical cancer and many of them will die. I can’t even describe what my feelings are, am I glad I am alive? Yes, don’t I have a feeling of guilt? Yes, I do, am I angry in that situation? VERY.

We have all the instruments on hand to change that situation. We have vaccines, we have new diagnostics approaches, we know that proper screening can save lives, and how to organize it effectively. But to implement all that we need, and there is nothing new in what I am saying, we need political will and commitment of member states, and funding, which is coming together. It is the same old story with the HIV epidemic, it is the same situation with COVID 19 developing behind our eyes and the same story for cervical cancer – the same challenges and same solutions! We need people’s vaccines for COVID…. and need affordable vaccines for HPV. We need affordable treatment and care. 

We, people living with HIV, do remember the awful part of the HIV epidemic – with millions of people dying in Africa without access to life-saving treatment, while people in the West were already saved. I have experienced it myself – I have lost too many friends in 2000 – 2004 back in Russia, as the Government was denying the epidemic existed, not providing lifesaving ARVs – while the world outside Russia was using ARVs. Neglected disease. Quotation from the Association of Women living with HIV in Nigeria (ASWHAN ) “Cervical cancer has been neglected, in Nigeria .”Someone has to start — I am asking UNITAID to step up, it is the mandate of UNITAID to implement game-changing innovations. We need that for cervical cancer.

I am asking GF, who has played a catalytic role in Hepatitis – this disease is now killing way less of our HIV positive people than it did recently. Let’s save our women living with HIV. I am very inspired by the example of Kyrgyzstan and I call member states who are receiving GF funding to include new interventions around cervical cancer into country proposals, and I ask GF to step up and support it. We also need to work under affordability, with other stakeholders. We need MPP to go and try to get what is possible from pharmaceutical companies, Countries which won’t be included in MPP licenses – as we know too many won’t be there. Governments of those countries, do not hesitate to save the lives of your citizens, do not listen to those who are saying you are too radical.

The Doha declaration was done for those cases, TRIPS flexibilities were established exactly for that kind of situations. It is a national emergency situation in too many countries, please act. But getting affordable vaccines and treatment is not enough – we need to remember lessons learned: do not medicalise the response; engage communities; establish people-centered and differentiated approach; create demand; overcome fears and myths; combat stigma and discrimination; establish peer support; and, treatment literacy and awareness.

 In reading the Background Note, I have noticed that there are troubles with demand, or retaining on treatment is complicated. These are bad signs that give an impression we are trying to make business as usual. We already know what works and what interventions are an essential part of public health even not being medical ones. This work to support medical interventions and community engagement gives us a unique mechanism of accountability and provides feedback to make sure that we are building the most efficient systems, that communities and civil society will notice gaps and will come advocating for changes. I will finish with quotations from ICW: WA – “Local and Regional HIV women network should be financial and technically funded to sensitize and refer its members for cervical cancer screening, treatment and other palliative measures.”I really hope that this Thematic segment will help us to save lives and build effective response for cervical cancer and HIV.

Dear Board Leadership, Board Members and Peter Sands,

Community-led and community-based health systems are essential for Resilient and Sustainable Systems for Health that are person-centred, equitable, evidence-based and inclusive

We are a group of global networks and organisations working to advance global health. We have come together to call on decision makers, civil society, technical experts, relevant private sector and other stakeholders from across the global health response to explore how vertical disease-oriented health programmes can integrate, evolve and transform in order to respond and meet the health needs of all people everywhere, and ultimately achieve the highest attainable standard of health through universal health coverage (UHC).

The COVID-19 pandemic (exacerbated by the collision of communicable and noncommunicable disease) has brought the importance of resilient and sustainable systems for health into sharp focus as the first line of defence against the outbreak of disease. 

However, not all COVID-19 responses have recognised the importance of scaling up the work on human rights, the removal of legal and other barriers that hinder access to health, and the importance of community-led and community-based health infrastructure and systems. 

The vital role of communities and civil society has been amply demonstrated in responses to COVID-19 all over the world. Communities have been at the forefront of the pandemic response, delivering life-saving and essential medication despite lockdowns and supply chain disruptions, ensuring food supplies, offering psycho-social support and housing and developing public-information campaigns. Community-led health systems are dynamic, have demonstrated ability to deliver integrated programs across disease areas, and can reach the most marginalised and vulnerable. 

A global survey by UHC2030 and the Civil Society Engagement Mechanism (CSEM) has found that many governments are making decisions without the meaningful engagement of community, people with lived experiences and civil society representatives. Without due consultation of this health expertise, including social and behavioural research and qualitative health data, national response plans will be incomplete and will inadequately reflect the pandemic’s disproportionate impacts on marginalised and at-risk populations. Moreover, the shrinking of civil society space, the persistence of laws that criminalise exposure and transmission of communicable disease, and the disproportionate use of criminal laws and regulations against key and vulnerable populations during COVID-19, all seriously threaten the attainment of the global health goals. 

We know from decades of experience that excluding civil society and community engagement from health approaches results in failure. To be effective, universal health coverage and epidemic preparedness strategies must be based on diverse and multi-sectoral systems for health that integrate and resource community responses as an essential component, rather than an ‘optional extra’. These strategies need to be person-centred and decentralised, addressing all the health needs of the community, especially when targeting communities underserved by current health systems. 

We warmly welcome the Global Fund’s commitment to reinforce systems for health by supporting urgent enhancements to community-led response systems, as part of the four-pronged response to the COVID-19 pandemic. In the 2017-2019 allocation cycle, the Global Fund invested more than US$100 million in community systems strengthening. We urge you to safeguard and build further on this strategic investment that has built resilience and sustainability, making a huge difference in the ability of communities to respond to COVID-19.

We therefore call on the Global Fund to:

  • Prioritise and proactively support community-led and person-centred health initiatives as a crucial component of Resilient and Sustainable Systems for Health
  • Ensure the active and meaningful engagement of civil society, communities and people with lived experiences at every stage of the design and implementation of universal health coverage and COVID-19 response
  • Invest in strong, locally community-driven UHC monitoring and accountability mechanisms at district and national level
  • Invest in robust public health data mechanisms that monitor accurately the response and can provide information about which communities need greater attention and enhanced access to services so that they are not left behind
  • Increase dialogue and initiatives supporting governments to ensure all UHC legislation is rights-based and inclusive, and where necessary reform and repeal laws that criminalise communicable disease


Georgina Caswell, Head of Programmes, Global Network of People Living with HIV (GNP+)

Victoria Grandsoult, Executive Director a.i., UNITE Global Network of Parliamentarians to End Infectious Diseases

Cary James, Chief Executive Officer, World Hepatitis Alliance

Nina Renshaw, Policy and Advocacy Director, NCD Alliance 

Lucy Stackpool-Moore, Director, HIV Programmes and Advocacy, International AIDS Society (IAS)

Contact: Georgina Caswell, email – gcaswell@gnpplus.net

To: Ms Deborah Waterhouse, Chief Executive Officer 

Copy: Ms Anjali Radcliff, International Government Affairs, Policy and Advocacy Director  

Civil society organizations in Eastern Europe and Central Asia (EECA) urge ViiV Healthcare once again to take immediate steps to ensure everyone who needs dolutegravir (DTG) receives it in the countries of our region and beyond. 

As we have pointed out numerous times in our previous letters and at various meetings, there are countries in EECA, region with fastest-growing HIV epidemic, which cannot afford using DTG in the first line due to the drug’s exorbitantly high cost. These countries include Azerbaijan, Belarus, Kazakhstan, and Russia. In your letter dated August 22, 2019, signed by the CEO Deborah Waterhouse, ViiV Healthcare has indicated the intention to evolve the access policy for dolutegravir in upper-middle income countries by the end of the year. 

Based on the press release issued by ViiV on the 8th of July, 2020 (almost a year after the letter referred to in the previous paragraph)[1], which mentions “active negotiations” with the Medicines Patent Pool, we understand that no decision have been taken yet with regard to the access policy which would enable to fully implement the World Health Organization recommendation to introduce DTG as the preferred first-line option in the HIV treatment programmes. We think the solution for better access to DTG in EECA is long overdue, especially given the COVID-19 pandemic and the shrinking healthcare budgets across the region (and, indeed, across the globe). 

We consider this as an extremely alarming sign, and we fear that with this approach many people living with HIV in our four countries will be left without access to standard-of-care life-saving HIV therapy this year, although the discussions for improving access to DTG in upper-middle income countries of our region started almost two years ago. Further delays in the decision-taking process can cost lives, and our position is that no more delays can be afforded.  

At the same time, we observe a growing commitment to provide WHO-recommended first-line HIV treatment by the governments of the above-mentioned countries. Russia has almost tripled its procurement of dolutegravir in 2019-2020 in comparison to 2018-2019; the government of Kazakhstan has also started to provide more people with DTG and has been considering the use of a compulsory license mechanism to ensure access to DTG in the country is improved further. Thus, governments are indicating a clear willingness to increase the number of PLWH receiving the standard-of-care HIV therapy.

With this letter, we would like to reaffirm our request to the company to include Azerbaijan, Belarus, Kazakhstan, and Russia (which is not mentioned in the release) in the geographical scope of the licensing agreement with the Medicines Patent Pool (MPP). We believe that access to quality-assured affordable generics of DTG supplied in a competitive environment at prices currently achieved within the framework of the licensing agreement is the optimal solution, taking into account the context of the epidemic in EECA. We know that DTG can be produced and sold with a profit at prices below 5 USD per month, and this price level has already enabled some countries in our region, for instance, Georgia, Kyrgyzstan and Ukraine, to switch to DTG in the first line of HIV treatment. As we have mentioned above and in our previous letters, the situation remains urgent and requires immediate response from stakeholders to curb the epidemic in one of the most affected regions in the world, especially in the context of the COVID-19 healthcare crisis which exerts significant pressure on the healthcare systems. 

Again, as we have pointed out before, in the absence of an appropriate solution to the issue of DTG access, we would welcome, encourage and support the ongoing efforts of the governments to utilize legal opportunities provided by the national regulatory framework in line with the TRIPS agreement to expand HIV treatment coverage. 

We would like to thank ViiV Healthcare for the contribution to combating the HIV epidemic the company has made so far. However, more efforts are needed now, and we would appreciate your prompt response to this very urgent request.

Signed by (in alphabetical order):

100% Life, All-Ukrainian Network of People Living with HIV, Ukraine

AGEP’C Public Foundation, Kazakhstan 

AIDS, Statistics, Health Regional Public Organization, Russia 

ALE Central Asian Association of People Living with HIV

Answer Public Foundation, Kazakhstan

Global Network of People Living with HIV, GNP+

International Treatment Preparedness Coalition (ITPC Global)

Kazakh Union of People Living with HIV, Kazakhstan 

Patients in Control Movement, Russia

“People PLUS” Regional Non-Governmental Organization, Belarus

“Positive Movement” Belarusian Public Association, Belarus  

Treatment Preparedness Coalition in Eastern Europe and Central Asia (ITPCru)

To read the letter in Russian, click here

[1] https://viivhealthcare.com/en-gb/media/company-statements/evolving-our-approach-to-access/

Alexandra (Sasha) Volgina at GNP+ calls on UNAIDS board members to invest in and utilise HIV community expertise in COVID-19. UNAIDS 46th PCB – Agenda item #5, 25 June 2020.


In country after country, we are seeing organisations of people living with HIV leading the response to COVID-19 in their communities.  This is no surprise given the years of experience we have of responding to a global pandemic. 

We are experts in challenging stigma and discrimination against those living with a virus. 

We are experts in promoting health-seeking and health-protecting behaviour amongst marginalised populations. 

And we are experts in understanding the latest science and using it to protect ourselves and others. 

We have unrivalled reach in communities– because we are of the communities. 

We appreciate UNAIDS Executive Director, Winnie Byanyima’s straight talk , “Even before COVID-19 we were not on track to meet our targets for 2020. Now the COVID-19 crisis risks blowing us way off course.” We simply cannot let this happen. Now more than ever, the world needs the creativity and leadership of the HIV movement. 

Getting back on track urgently requires strong leadership and political commitment but most of all it needs meaningful partnership with communities. Governments must urgently deliver on their promise that “at least 6% of HIV resources are allocated for social enabling activities”. These activities include “advocacy, community and political mobilization, community monitoring, public communication, and outreach programmes for rapid HIV tests and diagnosis, as well as for human rights programmes such as law and policy reform, and stigma and discrimination reduction”. 

Even with limited resources, we are ready and eager to support COVID-19 and HIV responses. During April and May of this year we surveyed networks of people living with HIV and community organisations to understand more about their experiences during COVID-19. 

Their replies showed the critical role that community-led organisations are already taking. In the face of massive challenges created by the pandemic, community-led organisations are exposing stock-outs and supporting incredible procurement efforts, taking care of those stuck abroad with no access to treatment and delivering ARVs sometimes at great cost to our own mental and physical health.

Their interventions go way beyond treatment. They are offering critical psychosocial support services and reliable information online, via social media or over the phone and finding ways to support people in financial difficulty, many of them marginalised people left out by government social security schemes.

Networks of people living with HIV have the skills and expertise to contribute to the national COVID-19 response and some governments have already invited them to help. Others must follow. 

We are experienced at gathering evidence to understand the lived experiences of people in our communities and we know how to frame and deliver prevention messages. Above all, we are determined to prioritise the needs of the most marginalised people and leave no one behind.

We – as organisations led by and rooted in communities – are best placed to do this vital work. Fund us and support us to do it.

We welcome the establishment of the multi-stakeholder task team, and we hope to contribute significantly, as we are the ones who best understand how to reach and mobilise our communities. We stand ready to work together with other stakeholders to make this group successful and rely on UNAIDS to lead the process in an open, inclusive and effective manner to achieve rapid and substantive progress. 

Amidst this global crisis, we call on you to engage our networks and communities and use our expertise to strengthen the HIV and the COVID-19 responses at national and global levels. 

Thank you.

Alexandra (Sasha) Volgina on behalf of GNP+ 

Image credit: Mandel Ngan

‘The Bill & Melinda Gates Foundation is taking away funding from HIV and malaria to respond to COVID-19‘. That is the take-away message for many from the interview that Bill Gates gave to the Financial Times on Sunday. If this is true, there are at least three reasons why Bill Gates is wrong.

Firstly, HIV is still here and remains a priority. Even though it is without question that COVID-19 is a daunting global health and economic threat, it does not mean that other health emergencies can be put on the back burner. Every day 6000 people acquire HIV and there are more than 37 million people living with HIV worldwide whose lives depend on accessing daily HIV-treatment. Every single one of them deserves our unconditional support and solidarity, especially in times of crisis. We also know what happens if that support is lacking. A dystopian example is a country like Russia. Here the number of new HIV-infections has been rising for years due to government neglect, with an increase of 29% in HIV-infections in 2019 alone. A rise like this in HIV-infections in other regions would have a devastating effect and put us back years in ending AIDS.

Secondly, any pandemic affects the most marginalized in society first and hardest. These communities suffer whether they are hit by COVID-19 or HIV. Therefore they should be at the center of our approach in addressing inequalities. Here the lessons of the AIDS response can help to create an effective COVID-response. This means that governments and donors should put the most affected communities at the center of their approach and respect their human rights. Not only because it is the right thing to do, but also because it leads to the most effective response that creates sustainable impact. We should not waste precious time in discussing which pandemic deserve our attention most, we should jointly support the needs of the communities that are hardest hit by all pandemics.

Thirdly, it does not make sense to steal from Peter to pay Paul. We cannot address inequalities by creating other inequalities. One of the most valuable lessons learned from the AIDS response is that we need to work together in global health and address cross-sectoral underlying issues. Why provide someone with HIV treatment, to have them die from a malaria infection? Why prevent someone getting HIV, to have them die of criminalization? This lesson has led to the formation of the Global Fund to fight AIDS, TB and Malaria in 2002. The effect has been impressive with more than 32 million lives saved since its inception. The last thing we need is to move back to a situation where funding for fighting one disease is taken away from another disease. This would not only be unethical, it is also a really ineffective way of investing in global health.

These times ask for true leadership in global health. Since the start of the early 1980s, we have lost more than 36 million people to AIDS. We know what is at stake. The immense progress that has been made over the last 40 years has to be upheld. What we need is a joint approach that helps us respond to current and future pandemics, building on the lessons and infrastructure from the AIDS response. We call on Mr. Gates to be clear in his message and to use his position as a global leader to bring people together and formulate an approach that is based on solidarity and an overall increase in funding for global health. Together we stand Mr. Gates.

Rico Gustav (Executive Director GNP+) and Mark Vermeulen (Executive Director Aidsfonds)

The HIV Justice Worldwide Steering Committee,  of which GNP+ is part, releases the following statement:

Communicable diseases are public health issues, not criminal issues: what we have learnt from the HIV response

Measures that are respectful of human rights and the empowering of communities are more effective than punishment and imprisonment.

As the world struggles with a new global pandemic, law- and policymakers are taking drastic measures in an attempt to minimise the spread of SARS-CoV-2, the virus that causes COVID-19. The situation continues to evolve rapidly and, as it does so, our liberties are being limited in unprecedented ways.

We remind law- and policymakers that each and every limitation of rights should satisfy the five criteria of the Siracusa Principles, as well as be of a limited duration and subject to review and appeal. These principles are:

  • The restriction is provided for and carried out in accordance with the law;
  • The restriction is in the interest of a legitimate objective of general interest;
  • The restriction is strictly necessary in a democratic society to achieve the objective;
  • There are no less intrusive and restrictive means available to reach the same objective;
  • The restriction is based on scientific evidence and not drafted or imposed arbitrarily, that is in an unreasonable or otherwise discriminatory manner.

We also warn law- and policymakers against the temptation to use the criminal law or other unjustified and disproportionate repressive measures in relation to COVID-19. These measures can be expected to have a devastating impact on the most vulnerable in society, including those who are homeless and/or living in poverty, as well as individuals from marginalised and already stigmatised or criminalised communities – especially where no economic and social support is provided to allow people to protect themselves and others, including through self-isolation.

As a global coalition campaigning to abolish criminal and similar laws, policies and practices that regulate, control and punish people living with HIV based on their HIV-positive status, we know the deleterious consequences of the criminalisation of diseases on both human rights and public health.

Criminalisation disproportionately impacts the most marginalised, stigmatised and the already criminalised people and communities in society.

Criminalisation is not an evidence-based response to public health issues. In fact, the use of the criminal law most often undermines public health by creating barriers to prevention, testing, care, and treatment – for example, people may not disclose their status or access treatment for fear of being criminalised.  It can also lead to ill-informed ‘trial’ by social and news media, and to a myriad of human rights violations, from arbitrary arrests and detentions to unfair trials (or no trials at all under new emergency measures) and harsh prison sentences. This can also lead to the spread of infections and communicable diseases in prisons and is of particular relevance in the context of COVID-19, which reveals, once again, the need to address overcrowding and other poor healthcare and sanitation conditions that are all too common in prisons and other closed settings.

Our experience has taught us that hastily drafted laws, as well as law enforcement, driven by fear and panic, are unlikely to be guided by the best available scientific and medical evidence – especially where such science is unclear, complex and evolving. Given the context of a virus that can easily be transmitted by casual contact and where proof of actual exposure or transmission is not possible, we believe that the criminal justice system is unlikely to uphold principles of legal and judicial fairness, including the key criminal law principles of legality, foreseeability, intent, causality, proportionality and proof.

The human rights of those involved in criminal cases related to COVID-19 are at risk of being ignored or violated.

We therefore urge law- and policymakers, the media, and communities at large, to keep human rights front and centre as we collectively respond to a new public health crisis in a climate of fear and uncertainty. It is more critical than ever to commit to, and respect, human rights principles; ground public health measures in scientific evidence; and establish partnerships, trust, and co-operation between law- and policymakers and communities.

The HIV JUSTICE WORLDWIDE Steering Committee, comprising: AIDS Action EuropeAIDS and Rights Alliance for Southern Africa (ARASA)Canadian HIV/AIDS Legal NetworkGlobal Network of People Living with HIV (GNP+)HIV Justice Network;  International Community of Women Living with HIV (ICW)Positive Women’s Network – USASero Project; and Southern Africa Litigation Centre.

Additional references

Last week, a group of human rights experts at the United Nations warned governments against the abuse ofemergency measures to suppress human rights:

“While we recognize the severity of the current health crisis and acknowledge that the use of emergency powers is allowed by international law in response to significant threats, we urgently remind States that any emergency responses to the coronavirus must be proportionate, necessary and non-discriminatory,” the experts said. “Restrictions should be narrowly tailored and should be the least intrusive means to protect public health.” Also, authorities must seek to return life to normal and must avoid excessive use of emergency powers to indefinitely regulate day-to-day life.”

UNAIDS also issued guidance last week that included a number of recommendations, including recommending that States “avoid the use of criminal laws when encouraging behaviours to slow the spread of the epidemic”, noting that empowering and enabling people and communities to protect themselves and others will have a greater overall effect.

And, as described in a recent open letter by more than 800 public health and legal experts in the United States providing recommendations to government officials: “Voluntary self-isolation measures [combined with education, widespread screening, and universal access to treatment] are more likely to induce cooperation and protect public trust than coercive measures and are more likely to prevent attempts to avoid contact with the healthcare system.”


Commentary By Rico Gustav, Executive Director of Global Network of People Living with HIV

COVID-19 has exposed how weak our health systems are and how little attention we have paid to global health security. Thailand, a country that has been well known for its public health systems and hosts one of the best public health universities, has declared within 4 weeks of the beginning of the spread of COVID 19 that they “are unable to stop the spread” of COVID-19. 

The story is not that different in the Netherlands, where local doctors serve as the first entry point to the entire health system. I live in a small city in the Netherlands where the local doctor is being overwhelmed by the number of people wanting to check if they have COVID-19. The combination of mass panic and the fact that the seasonal flu is going around is basically crippling the entire healthcare system. 

COVID-19 has made it clear that not only is our traditional health system not ready, neither is our global economic system. The mass panic is not something we should underestimate. Last week, a friend asked me whether they should start hoarding toilet paper, as if this is an epidemic of diarrhea. Non-prescription medicines are running out in our local supermarkets and empty shelves are everywhere. Financial sectors are going mad with everyone buying gold and leaving market stocks free falling into the abyss. The disruption in  the global chain supply reminded us of our interconnected universe, despite government leaders often denying the need to act as a united world.

For us, people living with HIV, we are relying on our ARV medications to be able to stay healthy. Compared with the general population, people with compromised immunity are at higher risk of contracting the new coronavirus and developing more serious COVID-19 illness or dying. However, on ARVs and with a suppressed viral load and higher CD4 count, people living with HIV do not all have compromised immune systems and are at no greater risk. 

The British HIV Association has stated  that for now, there is no evidence to determine whether people with HIV are at greater risk of COVID-19 acquisition or severe disease. The main mortality risk factors to date are older age and co-morbidities, including renal disease and diabetes. Some groups with relative immune suppression, such as the very young and pregnant women, do not appear to be at higher risk of complications, although numbers are very small. They also caution that there is a possibility of atypical presentations in clients who are immunocompromised.

Beyond our personal risk of increased morbidity, there is a growing concern that a global disruption to chain supply may also influence the supply of Active Pharmaceutical Ingredients (APIs), the basic ingredients for any medications, including our ARVs which is mainly produced in China. The generic ARVs are also mainly produced in India. This means that our entire ARV supplies depending on two countries sitting in the region most affected by COVID-19. While the Global Fund and UNAIDS have been working hard to monitor the impact of COVID-19 to ARV production and distribution,  we, as a global health community, need to also pay attention to the early signs of any issue to chain supply management of any medications. The challenge at the moment is that the story of COVID-19 is still unfolding and estimating the long term impact is a daunting task.

The pressure COVID-19 has put on the health system clearly illustrates  the need to evolve the traditional health system. To ensure that the health system is able to respond  to an outbreak like this, the engagement of community response to improve health outcomes and maintaining health security become crucial. When healthcare centers become fertile grounds for transmission, the role of the community to act as a bridge between people in their own environment and health centers, becomes critical. The role of community in this context also becomes crucial in improving early detection and quick response, because it can reach those who are unreachable to a passive-health system. 

We have experience in the HIV sector of using community systems to deliver client-centered care, while reducing the burden on  health care systems. In many places, what is called Differentiated Service Delivery is implemented, where people do not need to go to their health facility to collect their ARVs, easing pressure on health care workers, and allowing more time and attention on people who need it, with proven similar health outcomes. Now more than ever, we need to roll out these models  to ease the burden on the health care system, but also so that it becomes easier for people living with HIV to access their medication. Studies have also shown that during disease outbreaks such as Ebola, people are less likely to access other health services, as illustrated in West Africa where there was a 50% reduction in access to healthcare services, which increased malaria, HIV, and tuberculosis mortality rates,  illustrating the need for community responses to provide healthcare services in the community, when people are afraid to access health care facilities. 

While COVID-19, like HIV, does not discriminate against its target of infections, it exaggerates inequality that we have in the society. In countries where healthcare is highly privatized (like my own, Indonesia), poorer and marginalized people are more discouraged to go to healthcare centers to get tested. Even when people have symptoms that they know might be indications of COVID-19 infections, they just have to bet that it is not. Because if it is, the cost of the hospitals might actually be the thing that affects them most. This should make the world realise, that because health is a public matter, healthcare should be public and not left to the forces of the private sector. And because health is priceless, medications should be free at point of care.

While it is difficult to be helpful in situation where none of us are familiar with, as groups and networks of health activists working on HIV, here are some of the things we may be able to do:

  1. Stay safe: follow latest information about COVID-19 and always check the accuracy of the information by verifying the source.
  2. Check your local and national ARV supply and chain management: Ensure that you understand where potential bottlenecks are, what are the scenarios for solutions and how your network can help. Do similar things on any other health-commodities in AIDS response: needles and syringes, condoms, etc.
  3. Ask your Ministry of Health to instruct ARV access points to adhere to WHO Guidelines for Differentiated Service and to provide longer term (3 months) supplies for all PLHIV on ARV treatment, so that it lessens the frequency of going to healthcare centers.
  4.  Work with local key  population groups (LGBTI people, sex workers, prisoners and people who use drugs) who may be afraid to access health care services because of stigma, discrimination,  to ensure that they have access to health care and appropriate services. 
  5. Discuss with other community and civil society groups and create a small working group on COVID-19 and HIV that can act as an information center and distribution. The group should monitor latest news on COVID-19 and relay the accurate information to other civil society groups.
  6. Continue to engage with the government and other actors in HIV response to monitor the progress of COVID-19 and to prepare for different scenarios of pandemic.
  7. Monitor how your government’s response to COVID-19 and make sure that human rights continue to be promoted and protected. While quarantine is a public health tool, it is not an excuse to violate human rights and people’s right to dignity.

People living with HIV are resilient.  We have worked together tirelessly for quality  of life and better health outcomes and will continue to do so. 

With solidarity in this difficult time,

Rico Gustav