PAF’s Results of Two Survey Assessments of HIV Patients to Identify Root Causes of Financial Toxicity

Navigating the Costs of HIV Care – Conversations, Resources & Patient Experience

Many Americans struggle to afford needed medical care alongside their day to day financial obligations, which suggest a pressing need for cost conversations to help mitigate financial stress, yet very little is known about how and from where individuals prefer to receive cost information relative to healthcare services or how they intend to use the information.

To best address the cost concerns of our patients, PAF conducted two online survey assessments of patients to identify root causes of financial toxicity including preferences towards cost conversations, degree and sources of financial stress.

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Data reflects that patients diagnosed with HIV/AIDS are at a higher risk for household material hardships including living expenses such as food, housing, utilities and transportation as financial resources are diverted toward essential healthcare costs.

Across all demographic groups, HIV respondents report that healthcare costs created a financial burden, including:

  • Fifty-eight percent indicated experiencing a financial hardship in the previous 12-months due to medical care, with 16% indicating they owed more than $5,000.
    • Oral medication (73%), office visits (40%) and laboratory tests (24%) were the main cost concerns.
    • Insurance related costs (76%) led to the most financial strain.
  • To address financial stress respondents:
    • Reduced critical expenses (39%)
    • Borrowed money from family/friends (34%)
    • Paid utility bills late (23%)
    • Were unable to purchase groceries (20%)

Fortunately, there are publicly available resources to help patients with these cost conversations and with minimizing the impacts of financial toxicity.

PAF is a non-profit organization which provides case management services and financial aid to patients nationwide with chronic, life-threatening, or debilitating illnesses including HIV and access to HIV Prevention (PrEP). If you have questions or concerns around accessing or covering the costs of your medication, you can reach one of our case managers through our HIV, AIDS and Prevention CareLine (link below). Services are free of charge to the patient and can be provided in both English and Spanish.

HIV, AIDS & Prevention CareLine

Our website also hosts several useful resources under the Explore Our Resources tab on the menu bar. Patients can find all sorts of information on access to prescribed medications and facilitating cost of care conversations with their medical provider.