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This manifesto is driven by the concerns of a group of
members of the first generations of people who were diagnosed with HIV and has
the goal of demanding more visibility and attention for these issues from all
the stakeholders.
We believe there are a number of reasons that have
lead to this, namely:
·
The
loss of the exceptionality of HIV infection. This has led, in part,
to an increasing focus on prevention and the detection
of new cases.
prevention and the detection of new cases, which are
crucial issues in the response to HIV infection. However, improving our quality
of life is a need recognized by international actors.
·
Care
is organized with recently diagnosed patients in mind. That type of care only
meets our needs insofar as we happen to match that standard profile.
·
The
recession that began in 2008 has led to cutbacks in publicly funded services
and a greater weight of private care. Healthcare is increasingly market-driven.
·
New
generations of healthcare professionals lack the awareness and historical
perspective of their predecessors. This has a direct impact on our quality of
care and given that there is no infectious disease specialty they may not be as
well prepared to handle the complexity of HIV infection in the first cohorts
that were diagnosed.
Scientific studies point to differences that imply
that, as long-term HIV survivors, we can expect to age 10-15 years sooner than
the general population. Our goal is to focus on those of us who have been
living with HIV the longest. We see the greatest health impact (in terms of
intensity and complexity) of our struggles with HIV, affecting every area of
our life, as we will be discussing in this manifesto.
In line with other community organizations, we
define HIV Long Term Survivors (or survHIVors) as people who were diagnosed
HIV+ before HAART (Highly Active AntiRetroviral Treament; available since 1996).
Nonetheless, there are people in our group who do not
fit the above criteria. We are open to the inclusion and participation of any
HIV-positive person who can share our objectives and assume that the focus of
this group revolves around survHIVors.
It is important for us to mention everyone who has
shared or currently shares this experience with us. Families, partners,
friends, lovers and committed professionals have helped to build safe spaces to
fight, accept and overcome. Thank you for so much life and love!!
Healthcare
It has been estimated that about half of all people
living with HIV and approximately 20% of recently diagnosed patients are over
the age of 50. Within this group, those of us who have been living with HIV for
decades face unique challenges. According to a Spanish 2017 HIV+ patient survey, 46,7% of participants
had been diagnosed more than 15 years[1].
The particular relevance is a result of the clinical
complexity involved in managing surVIHvors given a potential combination of
factors:
- Persistent inflammation and immune overactivation
contribute to premature aging.
- A range of age-related co-occurring conditions (diabetes mellitus, hypertension,
osteoporosis, kidney failure, cardiovascular conditions, cognitive impairment,
etc.) tend to appear sooner and more frequently in HIV long-term survivors.
- Long-term consequences of AIDS-defining conditions.
- Long-term treatment toxicity and side effects
- Chronically prescribed drugs add up, leading to
polypharmacy. This doesn’t just imply a large number of pills to be taken each
day, but also higher risk of interactions, side effects, compliance problems,
prescribed drug misuse and degraded health outcomes.
We would like to point out that these issues are more
prevalent and intense among women survHIVors (untimely menopause, greater
accumulated toxicity, comorbidity, side effects, etc.) Despite this, women
continue to be underrepresented in clinical trials, citing low epidemiological
prevalence and incidence.
These clinical realities need to be managed by health
professionals with the necessary expertise, skills and sensitivity. A clear
example of this is the increasing use of primary care resources as HIV
treatment becomes “standardized”. Primary care units tend to lack the training
and resources to provide adequate care. On the other hand, we see with
frustration and unease that although there are many scientific publications and
events in this field, all that research is slow to translate into clinical
practice, if it ever actually reaches patients.
The fact that we were among the first generations of
patients living with HIV has also implied coping with a period when limited
medical progress had been made, with few treatment options, major toxicity and
without the expertise that is currently available. Our experience has written the story of the
HIV epidemic, and it continues to do so. Currently, our position is that, although we
may share many conditions with the general population, there are also specific
symptoms, clinical courses and treatments. For example, fibromyalgia tends to
present with greater intensity in women who are long term survivors of HIV.
Cognitive impairment, to name another condition, will generally have greater
emotional impact in patients who have already coped with a long history of
health issues. We believe these issues need to be addressed more effectively.
Psychosocial issues
Long-term HIV survival implies, in most cases, a
series of psychological effects that are linked to traumatic experiences and
vary among different groups (women, LGBTI, immigrants, convicts, etc…). In
general terms, we would highlight the following factors:
- Living for decades with a life-threatening condition.
- Suffering AIDS-defining illnesses.
- Losing numerous members of our closest network, and
ensuing grief.
- Stigma and discrimination and their internalized
manifestations (self-stigma and self-discrimination).
These sequelae can present in a way that resembles
post-traumatic syndrome: depression, anxiety, emotional numbing, intense anger,
guilt, insomnia, nightmares, hyper(self)vigilance , despair, substance abuse,
reckless sexual behavior, low self-esteem, social avoidance / isolation,
loneliness, inability to generate plans for the future, feelings of threat,
etc. All of these may manifest with differing degrees of intensity and may be
combined. They may come up at different moments in our lives and we are often
unaware of their connection to our history of living with HIV. These clinical
pictures have come to be known as AIDS
Survivor Syndrome[2].
The signs and symptoms of AIDS Survivor Syndrome often
present concurrently with neurocognitive impairment and/or other mental health
issues. This leads to a complex picture which may be difficult to spot for most
health and social care professionals, which makes it difficult to recognize and
exacerbates our vulnerability. It is often the case that symptoms are treated
without taking into account the overall dynamic and patient history. Mental
health professionals need training to understand and manage Aids Survivor AIDS
effectively.
Loneliness and isolation are a constant threat and add
to the risk of depression. This is increasingly related to older age and is
made worse by the fact that our support networks may have been seriously
reduced by a great number of losses. As more resources are channeled into
prevention, diagnosis of new cases and putting an end to the epidemic, our
feeling of neglect grows stronger.
We need care from healthcare professionals that moves
away from a paternalist and disempowering model, focused on our needs and
promoting our autonomy. This will contribute to leaving behind victimizing
frameworks, empowering us to move towards developing our full potential as
autonomous individuals and fully empowered citizens.
Many of us were activists in the 80s and 90s and now demand
more support, integration and representation within the organizations that we
helped to create and establish.
Socioeconomic issues
We have seen the deep connection between health,
emotions and our social, intellectual and job performance. Our ability to
manage that link will, to a great extent, determine our quality of life.
In the job market, many of us have had eventful
careers, interrupted by medical leave and health crises. Others have been able
to access a small disability pension, which has led us to survive in precarious
conditions. Those of us who have been capable of holding down a job find that,
despite facing very challenging medical and social issues, access to pensions
or early retirement is generally not an option. This is due to the fact that in
evaluating disability, basic things such as years since HIV diagnosis,
consequences of previous clinical episodes, medication side effects or
incapacitating mental health issues are not considered .
Access to housing is also a very serious concern for
many of us. We are particularly worried about the consequences of skyrocketing
prices in major cities and the lack of social housing and of care homes that
are capable of providing for HIV+ and LGBTI people without their condition or
identity becoming a major problem.
Many of us have become caregivers and depend on our
parent’s pensions. This generates stress and anxiety as we contemplate the
prospect of destitution.
We were the first to benefit from progress in the
treatment of HIV. We went from not having a future to having to plan ahead.
Nobody appreciates that change as much as we do. We rejoice at the prospect of
medical advances that are bringing the end of this epidemic into reach. However,
we feel that in that discussion, all stakeholders need to take survHIVors into
account.
We see ourselves as survHIVors who are capable of
managing our own concerns and living a fulfilling and autonomous life in every
area. We want to share our survival, our experience, our resilience and our
sense of community, not only with the community of people working in the field
of HIV, but with society as a whole.
survHIVors, fall 2019
Through our webpage you can express your support for
this manifesto (personally or as an organization or institution). This only
involves publicly stating your support and receiving occasional information
about surVIHvors via email :
Thank you for your interest!
[1] 1 Encuesta Hospitalaria de pacientes con infección por el VIH.
Resultados 2017. Análisis de la evolución 2002- 2017. (Hospital survey among
HIV-positive patients. Resultats from 2017, analyzing trends 2002-2017.) Centro
Nacional de Epidemiología- Instituto de Salud Carlos III/ Plan Nacional sobre
el Sida- S.G. de Promoción de la salud y Vigilancia en Salud Pública. Madrid;
2018.
[2] Stall R, Siconolfi D, Plankey D et al. AIDS Survivor Syndrome:
New Data from the Multi-Center AIDS Cohort Study (MACS). A presentation for providers
and community by Ron Stall, Ph.D., M.P.H., director of the Center for LGBT Health
Research at Pitt Public Health, University of Pittsburgh Held at the San
Francisco LGBT Community Center Friday, November 3, 2017.