Tag Archives: Patient Assistance Programs

Navigating Patient Assistance Programs

HEAL Blog is the recipient of the ADAP Advocacy Association’s 2015-2016 ADAP Social Media Campaign of the Year Award
By: Marcus J. Hopkins, Blogger

Since HEAL Blog began publishing, we have striven to provide information about Hepatitis C (HCV) treatments, news, and issues surrounding the disease. We have also, on occasion, provided information related to Patient Assistance Programs (PAPs) that can help patients living with Hepatitis (HCV), HIV, or virtually any other illness afford the cost of their medications and treatments if they are unable to do so. Continuing along this line of thinking, today’s blog will be dedicated to three such organizations: NeedyMeds, the Patient Access Network (PAN) Foundation, and the Patient Advocate Foundation (PAF and NPAF).

Money flowing out of an open pill capsule

Photo Source: Chemistry World

NeedyMeds is a 501(c)(3) national non-profit information resource dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs (NeedyMeds, 2017a). They provide a NeedyMeds Drug Discount Card designed to lower the cost of prescription medications by up to 80% (NeedyMeds, 2017b). The discount card can be used cannot be combined with insurance or Medicaid/Medicaid drug coverage plans, but can be used in lieu of those plans to reduce the out-of-pocket costs of the medication. In some cases, using the NeedyMeds card instead of insurance may result in a lower cost to the patient than their insurance co-pay.

In addition, NeedyMeds’ website offers a variety of resources to help connect patients to other programs and organizations. These links include information pertaining to various drug-specific PAPs, a “Help with Paperwork” assistance service, a searchable database of both independent and manufacturer PAPs, and local resources to help patients apply for these programs (NeedyMeds, 2017c).

The PAN Foundation is an independent, national 501(c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications. Partnering with generous donors, healthcare providers and pharmacies, PAN provides the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. Since its founding in 2004, PAN has provided more than 700,000 underinsured patients with over $2.5 billion dollars in financial assistance, through over 50 disease-specific programs. PAN has an administrative fee of only 5%. This means that $0.95 of every dollar PAN receives goes directly toward helping patients. For the last eight years, PAN spent less than one penny of each dollar it received on fundraising (PAN Foundation, 2016a).

The PAN Foundation has nearly sixty disease-specific assistance programs that help patients pay for out-of-pocket healthcare costs, including deductibles, co-pays, and co-insurance, travel expenses, and health insurance premiums, all of which are listed in a convenient, searchable database listed by condition (PAN Foundation, 2016b). This list also indicates the enrollment status of each program as Open (accepting applications for new and renewal patients), Renewal Only (accepting applications for renewal patients, only), and Fully Allocated (no longer accepting or processing applications for new or renewal patients). As of May 31, 2017, the programs for both HIV and HCV are open to new enrollees and renewals.

The Patient Advocate Foundation (PAF) is a national 501(c)(3) non-profit organization which provides professional case management services to Americans with chronic, life threatening and debilitating illnesses. PAF case managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis also assisted by doctors and healthcare attorneys (PAF, 2012a). These services are vital to patients who may not be familiar with the complex workings of the American healthcare system (and let’s face it – most of us aren’t).

One of the primary goals of PAF (and their advocacy arm, National PAF – NPAF) is to reduce the financial burden by assisting patients in finding potential assistance that provide financial support for co-pays, discount and indigent drug programs, transportation, housing, food, utility shut offs, and by helping negotiate payment plans for treatment providers. They also assist patients by assessing eligibility and helping with enrolling patients in the various programs, as well as providing a baseline of employment-related support as needed.

As with all PAPs and independent and government programs, there are financial and other prerequisites that clients must meet in order to qualify. One of the biggest barriers to enrollment in co-pay assistance programs (both organizational- and manufacturer-funded) is enrollment in a government-funded healthcare program, such as Medicaid. Being enrolled in Medicaid generally disqualifies applicants from receiving assistance, even if the out-of-pocket expenses with Medicaid coverage are more than what patients can afford. There seems to be little “wiggle room” in PAPs that allow these patients to receive assistance, and this is a significant barrier that has yet to be addressed in any meaningful way.

Patient Assistance Programs are vital tools that can help patients afford the medications and treatments they need in order to survive. Moreover, they are resources that most patients, and even healthcare workers, rarely know about or reference, which makes them a potentially untapped source of aid in today’s volatile healthcare market. HEAL Blog will continue to monitor PAPs and to provide more information over time.



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.


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Co-Paying the Piper

By: Marcus J. Hopkins, Blogger

One of the biggest changes for many lower income patients under the Affordable Care Act (ACA) has been the transition to paying co-pays for their medical care. For patients living with HIV, this has been exceptionally difficult in states whose Ryan White Part B programs – the AIDS Drugs Assistance Programs (ADAPs) – have opted to pay for their clients’ insurance premiums, rather than simply directly paying for services as they’re administered. What this means for patients is that, where they once never had to worry about doctors’ visits or paying for medications, depending on their state of residence, they may not be responsible for paying co-pays for services.

To the average American with a stable, if thinly stretched, income, this may not seem like a big deal; but, to those of us living with HIV/AIDS on fixed or fluctuating incomes, this distinction may create an additional barrier to care that may not have existed, prior to now. It can be difficult to explain to people how, when one’s income is already low, paying $20-$30 for a visit to the doctor requires foregoing other basic necessities such as food or a utility bill put off until later; paying $100 for your HIV medications every month can mean that you no longer have enough to afford rent.

People who live without a chronic disease often fail to see the hardships presented with treating that disease. Outside of simply the cost of treatment, there are additional social and emotional issues at play. Having to rely on government assistance for any reason is frequently derided in our nation as a weakness; a moral failing that renders the recipient incapable of taking care of themselves. As such, there is often a guttural sense of shame and humiliation that accompanies having to rely on these assistance programs. It is this component that is so often left out of the conversation.

More than just the psychosocial aspect of seeking assistance, the reality is that, when a patient discovered their HIV-positive status, they are often unaware of the options that exist, in the way of coverage. Now that people with pre-existing conditions can no longer be barred from insurance coverage, many simply assume that private insurance is the only option available to them. In states where Medicaid services have not been expanded to include coverage for people living with HIV, many patients are unaware of the existence of the Ryan White or ADAP programs that are in place to provide assistance for lower income patients who cannot afford the cost of treatment.

Even with these programs in place, their assistance does not meet the Federal requirement for insurance coverage, and clients whose incomes are higher than the maximum allowed for exemption from the penalty for not having private insurance are often left to foot that bill, as well. This is one of several reasons why many ADAP programs are switching their coverage over to paying for private insurance, rather than a direct payment model.

For lower-income patients still having trouble paying for treatment, even with insurance, Patient Assistance Programs (PAPs) exist that can help to partially or totally defray the costs. These programs are, however, largely unknown to people outside of the “know,” as it were – if you don’t “know” about them, you don’t know about them, and oftentimes, you only find out about them through random word of mouth. Sadly, many ADAP programs’ employees are unaware of these programs, and aren’t able to provide adequate information about either their existence or the requirements for applying.

One such program – the Patient Access Network (PAN) Foundation – has long served this purpose for people who are underinsured living with HIV. The maximum award level is $7,500 per year. Patients may apply for a second grant during their eligibility period subject to availability of funding.

Unfortunately, funds available through this program have been depleted. As of March 14th, 2016, patients seeking assistance for HIV are being encouraged to go to the Patient Advocate Foundation (PAF) for assistance. Individuals who have been recently approved for grants through the PAN Foundation will not be affected. When needing additional assistance or to re-enroll, individuals are encouraged to check back with PAN to determine if the fund has been re-opened and/or to seek additional support through PAF.

LOGO: Patient Advocate Foundation

While the funds at PAN for HIV assistance have been exhausted for 2016, there are still funds available for patients who are mono- or co-infected with HCV at both PAN and PAF; one only needs to apply separately for assistance with that specific condition, as funds for HIV drugs do not carry over to HCV without an additional application.

Additionally, it should be made clear that these programs are not designed for the uninsured; rather, they are designed for the underinsured – those who carry some form of insurance, but for whom co-pays are unaffordable. It is also crucial to understand that these programs cover only the costs associated with drug co-pays; office visits and other non-pharmaceutical costs are not covered, and are left up to the individual and/or the Ryan White funds allocated to their clients.

For more information about PAF, and how it differs from the National Patient Advocate Foundation, please visit www.patientadvocate.org.


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.

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