May 1, 2014
The HIV Prevention Justice Alliance (HIV PJA), National Working Positive Coalition (NWPC) and Positive Women's Network - USA (PWN-USA) are uniting to act for economic empowerment by and for people living with HIV. Together, we are changing the conversation -- and the policies -- of the HIV community from poverty to income, and from economic instability to security and independence.
Douglas Brooks, Director of the White House Office of National AIDS Policy (ONAP), must take immediate action to:
In the early years of the HIV epidemic, there was an expectation that those who were diagnosed would not survive for long. People diagnosed with HIV were at risk for losing their jobs as a result of health challenges, and because of stigma and discrimination.
When HIV programs began to serve PLHIV they focused on helping people with HIV access medical care and safety net benefits, such as Social Security disability coverage.
With the emergence of effective treatments for HIV, many people who had been ill felt better and wanted to start or return to work, or get trained or educated to develop new skills that would prepare them for the workplace. People who were newly diagnosed wanted to keep the jobs they had or learn how to get and keep jobs that would help them have medical care and income.
But there weren't -- and still aren't -- many resources or much knowledge in the HIV community about how to help people do this.
What's more, the Ryan White Program -- which represents a large percentage of the HIV continuum of care in the US -- has been widely interpreted to limit or disallow use of Ryan White dollars for employment services. This means that the policymakers and service providers most knowledgeable about and responsive to needs of people living with HIV are under-informed about and unsupported in efforts to address employment issues.
Living on a fixed income/public benefits is challenging for many people, regardless of health status, with the amount of benefits not meeting the needs of individuals or families. With reductions in federal funding for programs, many people have lost access to one or more sets of resources, and as the cost of living rises, the absolute or relative value of payments has declined sharply.
Employment is also an important arena of social engagement in our society. In addition to financial benefits, employment can create social bonds, raise self-esteem and reduce isolation.
Employment and employment services have been associated with improved HIV health and prevention outcomes. When people living with HIV are interested in working, being able to work can be good for their health!
HIV disproportionately affects people who are economically marginalized -- including people of color and/or LGBTQ people -- and having HIV can be economically marginalizing. People can miss work or lose jobs if too ill to work; face barriers and disincentives that affect many people with complicated or chronic health conditions; and also may encounter additional discrimination or bias from coworkers and employers. It is imperative to use all possible methods to help people with HIV access income and/or benefits.
Simply put: Every person living with HIV (and those who may work with them) will be equipped and supported to make well-informed decisions about employment, benefits and economic opportunities, through information, training, education, counseling, benefit planning, and the coordinated use of these resources.
Economic and employment interventions are critical, independent of HIV diagnosis. The communities most affected by HIV also have higher rates of poverty, unemployment, under-employment, employment discrimination, unequal access to education and employment opportunities and protections.
Now! In a time of a weak economy, long-term changes in the job market and shifts in public benefits, it becomes even more essential that people living with HIV have accurate and useful information on employment, benefits and economic opportunities.
Before implementation of the Affordable Care Act (ACA), thousands of people with HIV had to keep their income very low to not risk getting kicked off public programs that covered the costs of expensive HIV treatment and care. Now, many more people are eligible for expanded Medicaid programs or to purchase insurance through the state or federal exchanges. In addition, the ACA makes it illegal to turn down anyone from insurance coverage due to pre-existing conditions, meaning that more people with HIV can access commercial insurance (including plans subsidized under ACA).
In other words, more people living with HIV can now afford to work!
And there are clear ways to help people do so:
The bottom line: In the HIV world, we talk a lot about poverty; now more than ever, it's time to talk about employment. And time to act!
There are multiple steps to genuine economic empowerment of PLHIV -- with roles for HIV funders and programs; workforce development and vocational rehabilitation programs; local, state and federal government; and others.
We need a strong and coordinated effort, building on what was promised in the National HIV/AIDS Strategy. Douglas Brooks, Director of the White House Office of National AIDS Policy (ONAP), must take immediate action to:
The HIV Prevention Justice Alliance (HIV PJA), National Working Positive Coalition (NWPC) and Positive Women's Network - USA (PWN-USA) are uniting to act for economic empowerment for people living with HIV.
Please join us: www.preventionjustice.org/work.