Thursday, May 9, 2019

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

By: Kathleen Gallagher, Senior Director Health Services Research, Patient Advocate Foundation

Today, many Americans struggle to afford needed medical care alongside their day to day financial obligations due to rising healthcare costs, which suggest a pressing need for timely interventions to assess the level of patient engagement in cost conversations to help mitigate financial stress. This need is even more pronounced among under-resourced individuals who also indicate they are less likely than higher-income individuals to receive the cost information they need. From a consumer perspective, cost information is only meaningful in the presence of other information related to risks and benefits, which allows individuals to make a value-based rather than price-based decision. Unfortunately, very little is known about how and from where individuals prefer to receive cost information relative to healthcare services, as well as how they intend to use the information.

While the impact of medical care costs are important to address, data reflects that patients diagnosed HIV/AIDS are at a higher risk for household material hardships including essential living expenses such as food, housing, utilities and transportation that become even harder to pay when financial resources are diverted toward essential healthcare costs. Therefore, comprehensive cost information must be incorporated meaningfully into care planning, along with information about treatment options and patient priorities, to truly drive value-based personalized decisions. For individuals at risk or diagnosed with HIV, high drug prices and high cost sharing health plans are the most frequently associated drivers of  financial toxicity. Often individuals must choose between their daily medication, putting gas into their car, a hot meal or other financial obligations. As a result, the cumulative effect of financial toxicity has been shown to negatively influence both treatment compliance and quality of life.

To best address the cost concerns of our patients, Patient Advocate Foundation (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.

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 respondent’s:
    • Reduced critical expenses (39%)
    • Borrowed money from family/friends (34%)
    • Paid utility bills late (23%) 
    • Were unable to purchase groceries (20%)
Infographic 1

Given these data, it is reasonable to assume that costs may impact overall health outcomes and life flow. These harmful tradeoffs are even more pronounced among under-resourced individuals. While costs should be discussed with all people, extra effort must be made for under-resourced individuals as well as for individuals with serious illnesses and conditions requiring high-cost treatments such as HIV.

Healthcare systems should consider ways to routinely initiate cost of care conversations with all individuals, to address patients’ reported desire for conversation and their need for greater healthcare related cost information. Take the following:
  • Less than half (48%) of HIV patients had conversations with medical providers about care costs even though almost 80% indicated that these conversations were very important. 
  • Respondents utilized their health plan (63%) or advocacy groups (27%) as alternative sources of cost information. 
  • Almost 70% indicated that knowing out-of-pocket costs were extremely important when making care decisions and 41% wanted to have these conversations with their medical provider.

Infographic 2

Managing the comprehensive costs associate with an HIV diagnosis or preventative medications will require a strategic approach to ensure that these therapies are accessible to the people most likely to benefit from them — a process that should rely on clinician-patient care planning, cost information, and cost conversations.   Individuals want more information on their healthcare costs as these costs often cause undue financial burden and force individuals into harmful tradeoffs. In addition, like any information related to the risks of a treatment, patients want and need to understand how the financial risk associated with their medical care can be avoided, mitigated, and managed. Fortunately, there are publically available resources to help patients with these cost conversations and with mitigating the impacts of financial toxicity.

PAF is a non-profit organization which provides case management services and financial aid to patients across America 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.
Our website also hosts several useful tools that can be used by patients seeking information on access to HIV or prevention medication and facilitating cost of care conversations with their medical provider:

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

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