The Patient Advocate Foundation: Helping Patients to Access Effective Care
Interview with Alan Balch, PhD
Q Can you briefly discuss who are the patients that PAF helps?
Dr Balch: Our goal is to help patients who have difficulties accessing and affording their medical care. We help patients who are diagnosed with serious chronic or life-threatening diseases; many of them have cancer. We provide financial assistance for treatment, and help with childcare, transportation, and other ancillary expenses.
Q What are some of the difficulties facing patients with cancer today?
Dr Balch: In the process of interviewing patients or their caregivers, when they call, we identify their reasons for calling, and the barriers they are facing, and we document those. We track more than 150 different issues or barriers that patients identify. From the perspective of predominantly low-income patients, the top 5 things they ask for help with include transportation, financial assistance with medications, doctor’s visits, paying hospital bills, and help with rent and utilities.
Q What types of financial support does PAF offer to patients with cancer?
Dr Balch: We have 2 main areas for direct financial assistance—copay funds and financial aid funds. Our copay assistance funds are cancer-type specific, including some metastatic cancers. The funds cover a broad array of available medications and services, including almost anything that has a copay associated with the disease for which the funds have been established. It’s not just 1 or 2 medications but rather potentially hundreds of different things that may be eligible for coverage by the copay funds.
Our financial aid funds cover costs that patients incur during their treatment that fall outside of the copay or coinsurance cost-sharing structure of the health benefit design; of these, transportation is the most common. We established financial aid funds in response to data that we’ve collected about the financial difficulties that patients are facing.
Q What are the requirements to qualify for assistance through PAF?
Dr Balch: The eligibility criteria are different for the financial aid funds and for the copay funds. The financial aid funds mostly require a confirmed diagnosis and a verification of income of <400% of the federal poverty level; some of our funds have a lower threshold, but as long as patients’ income meets the <400% of the federal poverty level and they have a confirmed diagnosis, they would be eligible for our financial aid funds. For the copay funds (but not for the financial aid funds), patients must have health insurance.
Q How long does the approval process take, and how do patients know if they’re approved?
Dr Balch: For the financial aid program and the copay assistance program, the decision is usually made immediately after completion of the application. For most patients, if they have a Social Security number, we can verify their eligibility without submitting any paperwork. For the case management program, there are some eligibility criteria, including having a chronic, life-threatening, or debilitating disease. Some of the case management programs are cancer-type specific, so patients would also need to confirm the cancer diagnosis before being approved for support.
Q Does PAF offer other kinds of support programs?
Dr Balch: In addition to the direct financial assistance programs PAF offers, our case management program addresses the indirect costs of a patient’s disease. The case management program is our core support program. It’s a navigation program by definition: case managers are assigned to patients or to their caregivers to help them to overcome barriers to care that they have identified. These barriers can be lack of insurance or insurance that does not cover the patient’s treatment well enough, or at all. Patient barriers can also be the other expenses that come with a disease, such as missed time at work for treatments, lower income or loss of employment, bills building up, or needing a ride to the physician’s office.
Our case management services include help with transportation, housing security, and concerns related to utility shutoff and other patient needs.
The case management program mainly serves patients with an average annual household income of $23,000 for ≤2 individuals; that’s not a criterion but it does reflect the people who use this service. In the intake stage, information is gathered about the patients, their disease, what problems they are facing, and what attempts have already been made elsewhere to obtain help so that we don’t duplicate efforts. The case is then assessed, and usually within 24 to 72 hours, a case manager is assigned to that case; the case manager stays with that case until it is resolved. Some cases last a couple of days, and some last ≥1 years. Our case managers average about 20 contacts per case on behalf of the patient to overcome the access barriers to care, and any other issues, such as transportation, rent, and utilities.
Not everybody is eligible financially for a copay program, and many diseases have medical and living costs outside of copays. Some patients may not be aware of the drug manufacturer’s assistance programs, and that they may be eligible for a free drug program. There is a whole range of things that our case managers review to see if they can help patients based on their income status, their disease, their geographic location, and other factors.
The case management is a process of holding the patient’s hand and doing much of the work with and for the patient to find appropriate resources. It is not a referral program: we don’t give patients a list of places to call (not that there’s anything wrong with that), but often they are calling us because someone has given them our name.
Our goal is to find out whom to call, and make those calls on behalf of the patient. If we find something for which patients are eligible, we’ll help them to fill out their paperwork and enroll them properly, so there are no false denials. We provide patients someone who serves as their advocate. We also have a patient education empowerment program to teach patients how to be their own self-advocate. The focus of the program is to help patients to solve the type of problems that our case managers help patients with every day; we try to translate what the case managers know, and how they help patients with these types of problems.
Q Are oncologists aware of all the support services available to patients through PAF?
Dr Balch: I think the provider community is very well aware of the financial assistance we provide, particularly larger community clinics; they have financial counselors and administrative staff who, as part of their workflow, will try to navigate patients who are eligible for the copay assistance fund or the financial aid fund.
Lesser known is probably our case management program. Although not every patient needs a case manager, we are committed to making sure that patient groups are aware of our services. Most of our patients in the case management program come from other nonprofit organizations that refer patients to us, but we do get some from the provider community, as well.
Many of the major cancer centers in larger communities, cancer clinics, and hospital centers have their own patient navigators and case managers, but they don’t have their own financial aid funds. From an oncology provider perspective, the gap for them is typically more about the lack of financial support for their patients.
We do outreach to the provider community when we have a fund that’s open or available for financial assistance. We have an extensive e-mail list of all the providers, clinics, and hospitals that have used our programs and services. Many of them sign up for our alerts; whenever we have open funds or updates on those funds, we’ll send a message to the providers who have signed up to receive that information.
We have an obligation to promote the availability of our financial aid funds and our copay assistance funds so that patients who are eligible for those programs are aware of them and can take advantage of them.
Q How can providers help patients access all the support services?
Dr Balch: The first and most important thing we try to convince providers to do is not to wait. Typically, patients have already fallen through the cracks. The key is to screen patients early and often. Tell them what the financial journey will look like for patients with cancer. It’s not just low-income patients; all patients, even those who may have good insurance and may be able to afford care, often have costs that come as a surprise, such as a deductible or the transportation costs. Regardless of financial status, all patients with cancer need to have some awareness of the financial strain they may experience.
Commensurate with that, prescreening patients for eligibility in these programs is important. You can’t tell a person, “You have cancer” and then not talk about the likely side effects. You would also say, “There are things that we can do to deal with the side effects when they arrive. Let’s monitor those. Let’s be aware that you may experience these side effects. When you do, be sure to communicate them, so that we can help you identify an intervention.”
The same holds true for financial toxicities. Patients need to be aware of what to expect financially about their treatment, and they should have an opportunity to discuss it and to be prescreened for programs for which they may be eligible. The most expensive period for the patient is at the time of diagnosis. For many patients, before they are told they have cancer, they have already accrued significant out-of-pocket costs associated with the diagnostics and the acute care, the hospital visits, the emergency department visits–the things associated with the things that lead to the cancer diagnosis.
Chances are, most patients have already incurred a hefty cost in their deductible and other out-of-pocket costs, even before they are told they have cancer. This makes it even more important to have a conversation about costs. That first set of bills often catches patients by surprise. We need to remember that patients and their loved ones are absorbing a diagnosis of a significant disease, and they are going to hear about the financial challenges they are likely to incur. Frankly, we have no choice but to make patients aware of the financial element of their journey that they will be responsible for.
Q Are there other support services that patients with cancer should know about?
These are searchable directories that basically just tell you, “If you’re a patient with breast cancer looking for help with transportation and you live in Florida, these are the types of things that our case managers have found for which you may be eligible.” This directory is also available in app form in the Apple App Store—My Resource Search.
Other helpful resources for patients with cancer include NeedyMeds.org, which consolidates information about support services in a search medium. There are also clinical trials searches that help you navigate through the available clinical trials.
Q Is there anything else practice managers should be aware of?
Dr Balch: We only know what we learn from the patients who reach us. If providers are seeing any changes or new difficulties or barriers for their patients, particularly for certain disease areas and certain populations of patients, we would like to know them. We could be better equipped to try to handle those situations, or see if there are other things we can do to be helpful.