By: Marcus Hopkins, Blogger
Last month, the Community Access National Network (CANN) published its inaugural report for the HIV/HCV Co-Infection Watch. The watch details research conducted in the first month of 2015 concerning state ADAP formularies and state Medicaid Preferred Drug Lists (PDLs), as well as providing a few insights into the research process.
What makes the Co-Infection Watch different from other research endeavors is that it is being conducted from a “Patient-Centric” perspective – information is gathered in a way that most patients might attempt to do so, using publicly available websites, contacts listed on the site, and resources that the average consumer would know to go to for information.
This approach was taken in large part because the Patient voice in the policy and health care discussion often gets lost when speaking of coverage, costs, and accessibility. That is not to say that the Patient is being exempted from the equation; rather, the patient voice very often goes unheard, or is simply absent, entirely.
The report gives a very broad overview of what was encountered during the initial research phase of this project, and in so doing, remains slightly less incisive than future reports may be as the project expands. This somewhat delicate touch has largely to do with the fact that it’s the beginning of the year, and changes may be coming of which we’re unaware – websites may be in the process of being updated, new files may be being uploaded, and broken links may be corrected in the coming weeks.
That said, much of what was found on a site-specific level was very frustrating, in terms of gathering information. From a patient-perspective, many, if not most, ADAP websites were difficult to navigate, at best. In many cases, basic information – income requirements, formulary information, and contacts – were either buried in a seemingly endless chain of hyperlinks or simply unavailable.
The state of Georgia, for example, provides a contact number to call for inquiries about their ADAP program that connects directly to a general information center. In order to actually speak to someone who works for the ADAP program (or a volunteer, as was the case), I was transferred between several different numbers.
It is this kind of multi-step process that creates a barrier to care. Patients, when faced with the daunting task of having to ask already uncomfortable questions are presented with multiple points of contact just to get basic coverage or qualification information, often find themselves simply too annoyed with the process to bother continuing.
This observation does not, however, reflect upon the work done by Georgia’s ADAP employees and volunteers. When I finally did manage to make contact, they were more than happy to assist me with my questions, and it is not their fault that the state-run website provides a less-than-satisfactory amount of information.
Very likely, states whose websites are designed in a perfunctory manner with little attention paid to user-friendliness share consistent characteristics – a lack of resources, either monetary or personnel, may lead to less likelihood of a comprehensive website.
Again, this is not to say that the staff of any ADAP doesn’t care about whether or not their website is user-friendly; rather, that things take time, and sometimes, getting the ball of change rolling can sometimes take a Herculean effort to complete a Sisyphean process – there are always ways that things can be improved, but getting there can be difficult if adequate resources are unavailable.
Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.