Here's the whole document that Kelly Jon Landis abstracted a portion
of. I believe that the larger proportion of individuals with HIV are
those who are unaware of their HIV+ status.

Whether there is a huge number of people rejecting ARV based on
denialist beliefs or for other reasons is not a question I can answer.
From my experience, the answer is no, there is not. Most of the people
that bought that idea, with a few exceptions, have since died of AIDS.

People that don't take ARV nowadays do so because they're on an ADAP
waiting list because of the criminal price of drugs, because they are
in circumstances where it is difficult or impossible to access care or
they just don't give a sh.t about life that much to bother iwth drugs.
They may be worried about side effects.

But, in working with hundreds and hundreds of people from all walks of
life, it is not my experience that there are a lot of people buying
the denialist cant. With a few exceptions like that moron, Celia
Farber.

        George M. Carter

****
http://aidsaction.org/legislation/national_policy_agenda_2002_2003_complete.htm
The Pedro Zamora Public Policy Fellowship    

1. Support and Improvement of the Ryan White CARE Act

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act is
the largest source of federal funding solely focused on domestic HIV
care, treatment, and medical support services. Adopted by Congress in
1990, it is reauthorized every five years and funded through annual
appropriations; the current authorization is scheduled to expire on
September 30, 2005 and must be reauthorized by Congress. The CARE Act
was created as a safety net that has now become the foundation of
service delivery for HIV care.

Since the first authorization and the rapid development of its
programs, there have been concerns regarding gaps in service delivery,
inconsistent funding, and unmet needs. Both legislators and community
advocates have expressed interest in amending the CARE Act to address
these concerns. However, significant changes could dismantle the
health care system created for people with HIV, putting them at risk
for possible life-threatening health conditions. AIDS Action will work
with its members, Congress, the Administration, and coalition partners
to support the reauthorization, expansion, and full funding of the
Ryan White CARE Act.

2. Access to Care

Access to early medical care and treatment remains elusive for many
people in the United States including those who are of low income and
uninsured. Current treatments are expensive, effective only for some,
and associated with debilitating side effects. According to the
Department of Health and Human Services, one half to two thirds of
people living with HIV are not currently in care. Barriers in
accessing quality care result in disparities in health outcomes, which
are most often, experienced by people with low income, women, minority
populations, and Lesbian, Gay, Bisexual, Transgender (LGBT)
populations.

The quality of HIV clinical management has a direct effect on the
outcome of the epidemic. Standards must, therefore, be implemented in
HIV care to ensure that people living with HIV get the highest quality
of care and thus enjoy the best health outcomes possible. As HIV
disease progresses, treating it becomes more complex. Over time, HIV
can be compounded by life-threatening infections and severe conditions
caused by antiretroviral use that must be accurately diagnosed and
quickly treated. Thus, it is essential for all people living with HIV
to have access to qualified and experienced HIV health care providers,
who can successfully address the complex needs of their HIV positive
patients. AIDS Action will work with its members, Congress, the
Administration, and coalition partners to support access to quality
care for all people living with HIV.

3. Access to HIV related medications and treatment options

Current treatment for HIV infection is based on the utilization of
antiretroviral therapies and other medications to treat opportunistic
infections. Access to these medications must be assured for all people
to improve overall health outcomes and quality of life. While certain
private insurance programs cover HIV related medications, severe
limitations exist in accessing life-prolonging medications. To
establish an emergency safety net providing access to medications, the
federal government created the AIDS Drug Assistance Program (ADAP)
under the Ryan White CARE Act and, under Medicaid, allows states to
provide optional prescription drug benefits. Currently, ADAP is facing
a budget crisis; Medicaid requires an AIDS defining diagnosis before
access; and Medicare’s outpatient medication benefit will not be fully
implemented until 2006. AIDS Action will work with its members,
Congress, the Administration, coalition partners, and the private
sector to support access to life saving medication for all people
living with HIV.

4. Improved Surveillance Systems through Reporting and Notification

People are living longer without developing a clinical AIDS diagnosis;
therefore, an epidemiological surveillance, based on AIDS cases alone
no longer provides an accurate reflection of the epidemic.

The Ryan White CARE Act Reauthorization of 2000 directed the U.S.
Department of Health and Human Services to examine whether HIV
reporting and surveillance could be used to restructure its funding
formulas by 2007. HIV surveillance data must be standardized across
the nation, while individual states may implement HIV surveillance
systems that report names or other unique identifiers,. The U.S. will
never have a true picture of the epidemic without accurate and uniform
HIV surveillance from every state in the country. Further, reliable
data on HIV infection would permit rapid response and long-term
planning by local, state, and federal bodies to impact HIV prevention
and care efforts. AIDS Action will work with its members, Congress,
the Administration, and coalition partners to support the development
of an HIV surveillance system that accurately reflects the U.S.
epidemic.

5. HIV and the Faith Community

The American faith community is a trusted and established institution
that has been providing information, support, and services to its
constituencies since the beginning of the HIV epidemic. The diversity
of religions, beliefs, and practices that make up the faith community
offers a wide and far reaching network to distribute prevention
messages and offer care and support services to communities that may
be in need of these resources. When offering HIV prevention, care, and
support services, faith-based organizations that utilize
scientifically evaluated programs and non-discriminatory models will
be well equipped to meet the needs of their communities. As the
federal government continues to implement its faith-based initiative,
new monies must be provided in order to support the initiative’s
additional programs and services. AIDS Action will work with its
members, coalition partners, and the Administration to encourage the
participation of communities of faith in HIV prevention, care and
support services.

6. Improved Testing and Counseling

Everyone should be aware of their HIV serostatus in order to make
decisions about health care and their behaviors that could decrease
the number of new infections. Yet, according to the Centers for
Disease Control and Prevention, between 250,000 and 350,000 people in
the United States are HIV positive and do not know it.

There are multiple and complex reasons why people do not learn their
HIV status. Many people are unaware of their risk and see no need for
testing. Testing programs may have locations, hours, or costs that
make them inconvenient or inaccessible. Further, not all health care
providers are equipped or prepared to offer counseling and testing
services. Fear and concerns about privacy, stigma, and discrimination
are still significant obstacles to testing. Additionally, the waiting
period between the time of testing and receiving the results
discourages many people from returning.

Advances in testing, including the approval of a rapid HIV test by the
Food and Drug Administration, provide an opportunity to receive fast,
accurate results and expand both testing availability and use in
non-clinical settings. HIV testing and counseling should be bundled
with testing for other sexually transmitted diseases. AIDS Action will
work with its members, coalition partners, and the Administration to
support improved voluntary testing and counseling programs that
encourage all individuals to know their HIV status.

7. Effective Prevention Messages

There is no cure for HIV infection, yet it is 100 percent preventable.
Adhering to effective prevention strategies is the only way to avoid
HIV infection. Factual, culturally relevant, and comprehensive health
information is essential to the development of effective HIV
prevention strategies. HIV prevention messages are most useful when
integrated into broader health promotion efforts such as those found
in educational institutions, correctional facilities, or as a part of
substance abuse and mental health treatment. The U.S. government does
not mandate a systematic, population-wide education program to teach
children and adults about HIV transmission and how to avoid risks for
infection. This lack of information has had serious consequences, even
for our youngest citizens. At least 50 percent of new infections in
the U.S. occur among young people under the age of 25. AIDS Action
will work with its members, Congress, the Administration, and
coalition partners to advocate for factual, comprehensive, culturally
relevant, and scientifically evaluated prevention models to be
developed and implemented across the United States.

8. Research Needs of People Living with HIV

As we understand more about the human immunodeficiency virus (HIV),
the evolution of infection, and how clinical management affects
patients, new issues arise around treatment interventions and quality
of life. It is therefore important for scientists and researchers to
examine the new questions and challenges that surface for people
living with HIV. Research initiatives must explore the following
subjects: side effects and chronic conditions caused by long term use
of antiretrovirals, drug resistance and viral mutations, adherence and
treatment interruption, primary infection and transmission risk, and
body mass and physiological changes. AIDS Action will work with its
members, Congress, the Administration, coalition partners, and the
private sector, to support the expansion of research efforts dedicated
to examining these and other long-term health issues and the related
needs of people living with HIV.

[back to introduction]

AIDS Action

1906 Sunderland Place NW

Washington, DC 20036
   

Phone: (202) 530-8030
Fax: (202) 530-8031
Privacy Statement