Seeing more than HIV: A person-centered approach to HIV care 

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Progress made over the past 40 years has turned HIV from a death sentence into a manageable condition. Today, with regular treatment, people living with HIV can live and age well with HIV. The groundbreaking development of effective HIV medicines has enabled many to suppress the virus to undetectable — and untransmittable — levels (U=U), meaning the virus cannot be passed on. Alongside access to prevention methods and services, this has contributed to a steady decline in new infections and deaths from HIV and AIDSi. Yet, there is no time for complacency if we are to eliminate it once and for allii.

In 2016, United Nations member countries committed to end the AIDS epidemic by 2030iii, but approximately 100,000 people are diagnosed each year across Europeiv. The fight is far from over because tackling HIV goes far beyond viral suppression. Mindful of that, in 2021, UNAIDS put forward a new strategy that revolves around closing the inequality gap that is fueling the HIV and AIDS epidemicv.  

Achieving the U.N. global HIV targets requires a well-rounded response that addresses social inequalities and the unmet needs of people living with HIV and those who may benefit from HIV prevention. This shift must not only promote a more person-centric approach to testing, prevention and treatment, but also a more socially-inclusive and stigma-free response that addresses the social determinants of health driving HIV, and positively impacts the overall quality of life of those living with HIV. 

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Treat the person, not just the virus. 

Reaching undetectability levels is important but seeing more than the virus is, too. We need to open up conversations that can inform routine HIV care. Listening, valuing, and integrating patient voices is the only way to ensure an individualized approach to HIV that sees people living with HIV beyond their virus. Listening we have learned that 56 percent of people living with HIV aren’t fully satisfied with their current medicationvi.

Reaching undetectability levels is important but seeing more than the virus is, too. We need to open up conversations that can inform routine HIV care.

People living with HIV are more vulnerable to comorbidities, face stigma and discrimination and experience a lower health-related quality of lifevii. For some, taking their treatment daily elicits fears of disclosure of their HIV status, creates treatment fatigue, or becomes a daily reminder of their condition. This in turn has a negative impact on treatment adherence, but also on mental health and quality of lifeviii.  

Going from 365 pills a year to less frequent dosing may help address the unmet needs that still exist for someix. This goes in tandem with a health care environment that appropriately values and adopts these new therapies to offer choice and best possible care.  

This innovation drive informed by patients’ wants, preferences and needs, must also recognize the value of HIV prevention toolsx. Combined investments in person-centric HIV prevention and treatment will offer significant value to people living with HIV and people who may benefit from pre-exposure prophylactic, or PrEP, leading to improved retention in care and strengthening health systems, while providing public health value beyond the health care sector. 

Seeking more than one way forward by prioritizing individualized care. 

Seeing beyond viral suppression also means catering to the individual needs and wants of people living with HIV across all aspects of their lives. We must recognize that one size doesn’t fit all and put in place an individualized approach to measuring therapeutic success and implementing healthcare delivery models for people living and aging with HIV.  

To reach the 2030 elimination goals, we must develop prevention and treatment tools and care systems tailored to the unique needs of under-served populations, and to the evolving needs of HIV across a lifetime.

Measuring therapeutic success beyond viral suppression by including patient reported outcomesxi in national clinical guidelines and health technology assessment processes can play a unique role in this process. This would promote a co-decision approach to disease management and ensure that the experiences of people living with HIV are what guides the prioritization of clinical research and practice, as well as decision-making on access.  

To reach the 2030 elimination goals, we must develop prevention and treatment tools and care systems tailored to the unique needs of under-served populations.

Those at the margins. Leaving no one behind. 

In Europe, marginalized and vulnerable population groups like migrants, sex workers, people who use drugs, transgender people, men who have sex with men, and women are disproportionately affected by HIV and more vulnerable to stigma and discrimination, as well as to the restrictive social and legal environments that have historically fueled the HIV epidemic. This in turn creates an inequality gap in access to health care, as well as to HIV prevention and treatment toolsxii.

We need a whole-of-government and whole-of-society approach to ensure that we address the social and economic determinants of these inequalities, including by achieving the UNAIDS 10-10-10 targets against punitive legal and policy environments, stigma and discrimination, and gender inequality and violencexiii. From a health sector perspective, this means involving communities in decision-making processes, as recognized in the GIPA principlesxiv, and investing in innovative service delivery models and community-led services that deliver care with, for and from the communities.

The EU must lead the way 

The new EU Commission will be the last full mandate ahead of 2030. This gives the unique opportunity to ensure Europe achieves the U.N. global HIV targets. The EU and its member countries cannot afford to let progress stall or reverse. It is time to collectively recommit to a new HIV Action Planxv that ensures that HIV continues to be a political priority for Europe. This plan should embed the UNAIDS goals in the EU policy agenda and put in place the right guidance and tools to ensure that EU member countries are on track to meet the elimination targets by 2030.

The new EU Commission will be the last full mandate ahead of 2030. This gives the unique opportunity to ensure Europe achieves the U.N. global HIV targets.

The whole HIV community needs to stand behind this strategy and the renewal of an EU Action Plan for HIV through a multistakeholder and holistic approach, that encompasses both the health-related and social dimensions of the HIV and AIDS epidemic.  

We at ViiV Healthcare stand ready to partner and contribute to this vision, and make sure that we leave no one behind. The time to act is now. 


References:
[i] https://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2016/july/20160712_prevention-gap

[ii] WHO. (2017). HIV: from a devastating epidemic to a manageable chronic disease. Available from: https://reliefweb.int/report/world/hiv-devastating-epidemic-manageable-chronic-disease. Last accessed: August 2023.

[iii] https://www.un.org/pga/70/2016/06/10/press-release-bold-commitments-to-action-made-at-the-united-nations-general-assembly-high-level-meeting-on-ending-aids/

[iv] https://www.ecdc.europa.eu/sites/default/files/documents/2022-Annual_HIV_Report_final.pdf

[v] https://www.unaids.org/sites/default/files/media_asset/global-AIDS-strategy-2021-2026_en.pdf

[vi] de los Rios P, Okoli C. Young B, et al. Treatment aspirations and attitudes towards innovative medications among people living with HIV in 25 countries. Popul Med. 2020:2:23. doi:10.18332/popmed/124781

[vii] den Daas et al. (2019). Health-related quality of life among adult HIV positive patients: assessing comprehensive themes and interrelated associations. Quality of life research. Available from: Health-related quality of life among adult HIV positive patients: assessing comprehensive themes and interrelated associations – PMC (nih.gov). Last accessed: August 2023.

[viii] Safreed-Harmon K et al. (2019). Reorienting health systems to care for PLHIV beyond viral suppression. Available from: https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(19)30334-0/fulltext. Last accessed: August 2023.

[viii] ViiV Healthcare. (2020). Optimising quality of life for all people living with HIV: Recognising the 4th 90.

[viii] Claborn, K., Meier, E., Miller, M. and Leffingwell, T. (2014). A systematic review of treatment fatigue among HIV-infected patients prescribed antiretroviral therapy. Available from:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4315727/. Last accessed: August 2023.

[ix] Colliver, V. (2023). Can we stamp out HIV? New monthly injections could offer hope. Available from https://www.ucsf.edu/news/2023/07/425781/can-we-stamp-out-hiv-new-monthly-injections-could-offer-hope#:~:text=Remembering%20to%20take%20medications%20each,to%20get%20it%20under%20control.. Last accessed: August 2023. 

[x] Mitchell, K. et. Al. (2023). Estimating the impact of HIV PrEP regimens containing long-acting injectable cabotegravir or oral tenofovir disoproxil fumurate / emtricitabine among men who have sex with men in the Unites States. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9950652/. Last accessed: August 2023.

[xi] Mott, F. (2017). Patient reported outcomes (PROs) as part of value-based care can shape therapy guidelines. Available from:  https://link.springer.com/article/10.1007/s40487-016-0038-7. Last accessed: August 2023.

[xii] HIV and transgender and other gender-diverse people. Available from: https://www.unaids.org/sites/default/files/media_asset/04-hiv-human-rights-factsheet-transgender-gender-diverse_en.pdf. Last accessed: June 2023.

[xii] UNAIDS Fact Sheet 2022. Available from: https://www.unaids.org/sites/default/files/media_asset/UNAIDS_FactSheet_en.pdf. Last accessed: June 2023. 

[xii] ECDC HIV/AIDS surveillance in Europe 2021. Available from: https://www.ecdc.europa.eu/sites/default/files/documents/2021-Annual_HIV_Report_0.pdf. Last accessed: June 2023.

[xiii] HIV prevention 2025 road map — Getting on track to end AIDS as a public health threat by 2030 (unaids.org)

[xiv] The Greater Involvement of People Living with HIV (GIPA): UNAIDS Policy Brief (2007) [1] HIV/AIDS, hepatitis and tuberculosis (europa.eu)

[xv] HIV/AIDS, hepatitis and tuberculosis (europa.eu)