47th PCB - Intervention by Iwatutu Joyce Adewole - Agenda item 15: Thematic Segment: Cervical cancer and HIV- addressing linkages and common inequalities to save women’s lives

Delivered by Iwatutu Joyce Adewole, Incoming Africa Delegate, African Girl Child Development and Support Initiative

I speak on my own behalf as a Nigerian young woman and as an incoming PCB NGO Africa Delegate.‘’

I want to speak of a silent killer on my continent. And of global solidarity and shared responsibility. I want to speak of cervical cancer.

Chair, 85% of women with cervical cancer and HIV live in sub-Saharan Africa. 85%! That’s almost half a million new cases in the region every 12 months. Not a total of women living with and dying of cervical cancer, but of new cases.

The HPV vaccine in my region costs about a hundred dollars. Let’s remember the financial gap women face and the many who live below one dollar a day. In the global north, over 90% of girls who need the HPV vaccine are receiving it. In my region over 90% of girls who need it are not receiving it. Let’s talk about inequality.

Madam Executive Director, we need not only one People’s vaccine for COVID, but another for universal access of all girls to HPV. Let’s talk about global solidarity.

Women living with HIV grapple with multiple vulnerabilities, including cervical cancer. Treatment is unaffordable for them, transport is unaffordable, machines in health facilities don’t work.

Yet, despite all these inequities, we have eliminated other conditions such as polio. We want the same efforts to be put into HPV. We need to strive to eliminate HPV and cervical cancer. I ask that the Joint Programme shares the responsibility to create new ways of meeting our health needs even if this means working with new partners and thinking more broadly in the HIV response to achieve this.

47th PCB - Key Note Speech - Thematic Segment - Agenda item 15: Thematic Segment: Cervical cancer and HIV- addressing linkages and common inequalities to save women’s lives

Delivered by Sasha Volgina, Global Network of People Living w/ HIV

Alexandra (Sasha) Volgina, a woman living with HIV and cervical cancder 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 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 to share 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% 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 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 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 screening, right in time - thanks 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 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 aweful part of the HIV epidemic - with millions of people dying in Africa without access to lifesaving 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 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 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 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.

47th PCB - Intervention by Jules Kim - Agenda item 15: Thematic Segment: Cervical cancer and HIV- addressing linkages and common inequalities to save women’s lives - Overview

Delivered by Jules Kim, Asia and the Pacific, on behalf of the NGO Delegation

I deliver this intervention on behalf of the NGO Delegation.

Cervical cancer is entirely preventable and as we have heard entirely possible to eliminate. With the availability of vaccines and routine screening, there is no need for any individual with a cervix, regardless of their gender or sexuality, including women, girls, trans*, non-binary and intersex people to be affected by or die from cervical cancer. And the concerning reality is that women living with HIV are more susceptible to developing cervical cancer.

Yet the continuing resistance to implementing inclusive and integrated systems of prevention, treatment, knowledge and care around sexual reproductive health and rights and the underlying inequities in our health systems and cultures against women and key populations, create unnecessary barriers to women’s health. This must change.

We can eliminate cervical cancer- but to do so we must stop denying the autonomy of all women and girls and key populations over their own bodies and sexual health. We must stop the delusion that women and girls do not have to informed about sex and sexual health and rights. We must fund the integration of essential care and combination prevention services for cervical cancer and HIV. And we must eliminate the financial, societal and structural barriers, including stigma, discrimination and gender based violence that prevent access to necessary support, services, prevention and care for all women, girls and key populations.

We urge MS to ensure funding and access to combination prevention, care, screening and treatment for cervical cancer for all women, girls, trans*, non binary and intersex people living with and affected by HIV in all our diversity. We can and must act to prevent and eliminate cervical cancer.

47th PCB - Intervention by Jules Kim - Agenda item 11: Report of the PCB Working Group on the Joint Inspection Unit Management and Administration Review of the United Nations Joint Programme on HIV/AIDS (UNAIDS)

Delivered by Jules Kim, Asia and the Pacific

This statement is delivered on behalf of the NGO Delegation and in support of the statements by Frontline AIDS, AIDS Action Europe, Aidsfonds and the Global Network of Sex Work Projects (NSWP) and in support of the revised guiding principles and the recommended amendments to DP 13.7 calling on the United Nations Joint Programme on HIV/AIDS speak with one voice, respecting its guiding principles, and acting to protect, respect and fulfil the human rights of all.

Today is International Day to End Violence against sex workers. It is a day where we commemorate the lives of sex workers lost to violence. There is not a sex worker in the world who’s life has not been touched by violence. And this has been heightened during the COVID pandemic

Today sex workers globally stand collectively to remember

  • the violence perpetrated against ourselves and our friends, families and children just because of our occupation
  • the systemic barriers that prevent us from accessing essential HIV prevention services, testing, treatment, support and care

Today we remember other sex workers no longer with us and we stop the silencing of us by the systems that take advantage of the stigma and discrimination that invisibilises us and ignores our agency, voices and lived realities.

It is a day when we affirm that sex work is work and recognise that we are a community disproportionately affected by HIV and AIDS and the COVID-19 pandemic. This cannot and will not change without the end to the state sanctioned violence against us through the criminalisation of our work. Evidence definitively supports that decriminalisation of sex work will and does reduce HIV rates and risk and is the single intervention that would have the greatest effect on the course of HIV epidemics across all settings for all sex workers regardless of how we ended up in sex work.

So today on International Day to End Violence Against Sex Workers we call for the recognition of sex worker rights as an essential step in ending gender-based violence, a key driver of HIV among women and key populations. We demand that the violence against us enacted by the discriminatory laws and policies against us ends and we call on the UNAIDS Joint Programme including its cosponsors not act to perpetuate this violence against us.

47th PCB - Intervention by Alexander Pastoors - Agenda item 11: Report of the PCB Working Group on the Joint Inspection Unit Management and Administration Review of the United Nations Joint Programme on HIV/AIDS (UNAIDS)

Delivered by Alexander Pastoors, Europe

Thank you chair,

The NGO Delegation welcomes the outcome of the Working Group and appreciates the work done to implement both formal and informal recommendations of the JIU. The Joint Program and the UNAIDS secretariat have taken big steps in changing the organization in the direction of the UNAIDS we need as communities of people living with and affected by HIV.

The NGO Delegation supports the Decision Points and welcomes the clarification of the oversight role of the PCB via an annex to the modus operandi. It’s an indispensable step to restoring the faith of donors in the joint program and therefore, it secures the future of an indispensable organization to support governments, civil society, and communities in the fight to end AIDS.

Looking at the status report of the implementation of the JIU recommendations it is clear that in some aspects great steps forward have been taken, yet when it comes to the program of change for UNAIDS, given the statement of the USSA, further steps have to be taken.

The delegation appreciates the revamped Guiding Principles of the Cosponsors but is mindful of the observed divergence between official statements by Cosponsors and the HIV policies that supported by the dedicated staff of Cosponsors of the Joint Program. It’s a sign that what the PCB agrees upon does not always reach the boards of the Cosponsors and this needs to change. In short, the proof of the pudding, dear colleagues of the PCB, is in the eating.

The NGO Delegation is looking forward to the full implementation of the Decision Points on this matter.

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