Data Collection: Facts or Follies

As of February 2nd, 2012 there were 4,575 people across twelve (12) states on AIDS Drug Assistance Programs (ADAPs) wait lists; they are waiting to receive their live-saving medication they need to remain active, healthy, and productive members of their communities. In the meantime the U.S. Department of Health and Human Services' (HHS) Health Resources & Services Administration (HRSA) will be working on a data collection process with the main goal of improving access to all 56 ADAPs.

HRSA will soon be gathering data to access the viability of the ADAPs. These programs provide assistance to help low income, uninsured and underinsured people living with HIV/AIDS (PLWHA) access to life saving medications.
The study will seek to find answers to the rising enrollment in state ADAPs and states’ ability to meet these demands for ADAP services, or rather, lack thereof. Eight respondents from eight states (TBD) will weigh in on ADAPs. The individuals to be interviewed will fall into three general categories:

• ADAP personnel (staff at local and state health departments);

• State HIV/AIDS program leads (State AIDS directors); and

• Personnel from state and local programs such as Medicaid, and pharmacy assistance programs. (staff at local and state health departments)

It will take HRSA an estimated two-and-a-half months to complete their information gathering. They will be assessing factors that are contributing to the rise in ADAP services, i.e. earlier use of Anti Retro Viral Therapies (ARVs), lower attrition of existing clients, unemployment and loss of insurance, and increases in drug costs.

The study will also aim to examine factors that may decrease ADAP costs, such as health care reform, and other cost containment strategies. Study findings will be used to develop policy and recommend enhanced practices for managing state ADAPs.

HRSA is accepting public comments on their data collection process described above and these comments can be emailed to paperwork@hrsa.gov.

What is disturbing here is that no specific time, or focus appears to be devoted speaking with HIV-positive individuals who are or are not ADAP clients, advocates working at the local, state and federal level, nor any health care providers. To get the optimum picture of ADAP’s efficacy and ways to improve it, wouldn’t these stakeholders’ opinions be valuable? Shouldn't patient input be a focal point of the data collection?

This is of particular concern given recent reports only about fifty percent (50%) of the U.S. HIV-positive population appears to be in care and treatment. Given the newest data indicating that being on ARV treatment appears to be the single most effective method of preventing HIV infection, some assessment with this focus appears to be a top priority.

Also, which eight states are going to be chosen, and which people from these eight states will be interviewed? As is known each state ADAP is not the same, so a good sampling of states with various ADAP models must be represented in the data collection process.

Which criteria will be evaluated? Decreased funding in the areas of prevention, needle exchange programs, and case management should be top priority when accessing the increased usage of ADAP. As well, the economic downturn should be taken into consideration, loss of employment, and insurance of people living with HIV/AIDS (PLWHA).

Those working in HIV/AIDS at local, state, and federal levels know the reasons behind the problems that many state ADAP programs are having; they have the best ideas on how to fix the issues, and how to unify state ADAPs to make them more user friendly, and cost effective. Over many months now, even years, these issues, and ideas have been documented in letters and reports that have been sent to HRSA to best address these issues. Apparently, these reports have fallen on deaf ears.

The resources and time HRSA will spend conducting this research will be administratively costly, and may produce a very narrow approach to a program that needs to be looked at from a much broader prospective. Is this data collection process necessary? It will likely reveal what community, state, federal, and other industry leaders already know. It will be process that will take a better part of a year to implement, conduct, and report on.

Time is of the essence with 4, 575 people across 12 states on an ADAP waitlists, hoping to receive the medication they need to remain alive, healthy, and productive. This number is on the uptick and will continue to rise as cash strapped states are implementing their own broad state level cost containment strategies, while at the same time patient assistance and co-pay assistance programs are becoming overwhelmed. States cannot afford to wait and hope that health care reform will relieve these immediate problems.

HIV/AIDS stakeholders should demand that this data collection process helps to ensure that everyone living with HIV/AIDS has unfettered access to the care, treatment and resources so desperately needed.