Experts discuss issues faced by patients starting an HIV therapy regimen.


Patients with HIV have a unique journey, according to experts at the recent 2015 National Association of Specialty Pharmacy Annual Meeting & Expo.

While every patient’s journey is unique to their specific condition, patients with HIV in particular have especially difficult challenges and barriers to overcome.

“Certain kinds of diseases carry certain stigmas with them and HIV fits this profile,” said Susan Allen, director of Clinical Pharmacy Operations at Amber Pharmacy in Omaha, Nebraska. “People with HIV/AIDS have been targets of stigmas since the 1980s, and that was mostly due to lack of information or misinformation, and also fear in the general public. Unfortunately the stigma still exists to a certain extent today.”

Another issue related to the stigma associated with HIV is patients being discriminated against. Patients with HIV face discrimination in the work place, social settings, and even with their own family if their condition is disclosed, according to experts at the annual meeting in Washington, DC.

“Fear of discrimination can lead to delays in seeking testing and also embarrassment about obtaining treatment,” Allen said. “Both of these are reasons that confidentiality can be extremely important for patients with HIV.”

Confidentiality is of huge importance to patients with HIV, as many times their physicians are the only ones who know of their status. It is up to the physician to make sure there is no accidental disclosure of HIV status across any medium, including phone calls, mail, e-mails, and any other delivery platform.

Doctors should know specific phone numbers to call and what type of information can be left in messages to those lines.

“Sometimes they just want us to leave our first name and they realize that we’re calling. They don’t want us to leave a pharmacy name; they don’t want us to leave a phone number,” Allen said.

Patients may also have specific requests about deliveries made to their homes with their regimens enclosed.

These requests include not placing a return address or anything that mentions anything about a pharmacy anywhere on the package, or not packaging medication in such a way that one can hear the pills rattle when shaken.

“Another big one is patients request not to put paperwork about the condition in the delivery,” Allen said. “It’s important that you don’t disclose the HIV status of a patient unintentionally.”

Physicians should listen to each request made by the patient to ensure their needs are met. The condition is incurable, and therefore diagnosis may be a shocking and difficult thing to overcome.

Maintaining an empathetic attitude is crucial to developing trust in the patient-physician relationship. In many cases, the physician may be the patient’s only support system while going through this difficult time.

“Sometimes there’s no support system because a patient doesn’t wish to disclose their status. That can make it hard because they don’t have anybody to talk to about what’s going on with them. Other times it’s because they have disclosed their status and they’ve been shut off by their family and friends,” Allen explained.

Patients with HIV face barriers to care that patients with other diseases may not face, such as the cost of medication. Many HIV patients are at the poverty level, and even those who are not can have major issues gaining access to care due to cost of treatment.

The meeting panel discussed the role of specialty pharmacists in cutting costs for patients in order to ensure adherence is not an issue, as it so often is with patients with HIV.

“Make every attempt to reduce patients’ out-of-pocket costs to help with adherence to their medications,” Allen advised. “Do a thorough benefits investigation and find out what insurance does and doesn’t cover.”

For these patients in particular, specialty pharmacies are often the only source for financial information, so it is important that specialty pharmacists are properly trained in this area of counseling.

Another major issue for patients with HIV is lack of knowledge about their status, and therefore lack of treatment. As of 2012, 1.2 million Americans are estimated to have HIV. Of those, only 36% are being treated for their disease.

Treatment begins with trust and trust begins with the physician.

Building that trust through listening to the patient needs, keeping their status confidential, providing guidance and support through this difficult time is the optimal way to treat these patients effectively and ensure they adhere to their regimens.