Bridging the Gap: Why Patient Assistance Programs Matter to PLWHAs

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The Covid-19 pandemic has exposed numerous cracks in the U.S. public health system, but it has also demonstrated why patient assistance programs are invaluable tools bridging the gap for people living with HIV/AIDS (PLWHAs) who might have otherwise fallen through the cracks. Generally speaking, patient assistance programs assist people who have health insurance, but whose plans include high deductibles and/or high copayments; patient assistance program help people who are in-between jobs or maybe recently expired COBRA [Consolidated Omnibus Budget Reconciliation Act] insurance; and patient assistance programs often serve as a lifeline for people who have no health insurance and don't qualify for public assistance programs, such as the AIDS Drug Assistance Program (ADAP) or Medicaid.

The ADAP Advocacy Association has witnessed an increase in the number of PLWHAs inquiring about what help exists for them during Covid-19's uncertainty. Therefore, it seems relevant and timely to once again share information about some of the amazing patient assistance programs that exist for patients.

Photo Source: therigy.com

• NeedyMeds https://www.needymeds.org 

NeedyMeds is a 501(c)(3) national non-profit that connects people to programs that will help them afford their medications and other healthcare costs. NeedyMeds is not a program, so you can't sign up. They are an information source. They list programs that may provide you with assistance. You apply directly to those programs. NeedyMeds doesn't process any applications, determine eligibility, or supply medications. NeedyMeds does offer a useful Drug Discount Card. The free NeedyMeds Drug Discount Card App is available for iPhone and Android. In addition to the drug discount card and pharmacy finder to help you locate the 65,000-plus pharmacies nationwide that accept the NeedyMeds Drug Discount Card, the updated version has a drug pricing tool so you will know the estimated price of the drug when you pick it up at the pharmacy. 

• Partnership for Prescription Assistance https://medicineassistancetool.org

Pharmaceutical Research and Manufacturers of America (PhRMA) created the Medicine Assistance Tool (MAT) to provide a dedicated search engine that allows users to search for financial assistance resources available to them, their loved ones or patients in their lives through the various biopharmaceutical industry programs available for patients who are eligible. MAT is a free-to-use search engine that focuses its searches on patient assistance resources available to eligible patients. 

• Patient Access Network (PAN) Foundation https://www.panfoundation.org

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, they provide the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. PAN Foundation's HIV Treatment and Prevention Fund (currently closed) offers financial assistance for HIV treatment and prevention medications. The annual assistance amount is $3,400, but patients may apply for additional assistance at the end of their eligibility period (subject to the availability of funding).

• Patient Advocate Foundation (PAF) https://www.patientadvocate.org

PAF is a national non-profit organization, which provides case management services and financial aid to patients with chronic, life-threatening, and debilitating illness. In 2020, PAF provided direct relief to more than 192,000 patients from all 50 states and each US territory representing 629 distinct diagnoses through 44 unique patient service programs. Their mission is reflected in the practical problems addressed and the specific populations served, including its HIV, AIDS and Prevention Co-Pay Relief Program. The annual maximum award level is $7,500. It also now offers Medical Insurance Premium Assistance!

• RxAssist https://www.rxassist.org/patients

RxAssist is a nationally recognized, web-based medication assistance resource center. Established in 1999 with funding from The Robert Wood Johnson Foundation, RxAssist gives providers, advocates, consumer and caregivers comprehensive, up-to-date information in an easy to use format. It also offers a prescription discount card, Inside Rx, with saving on medications made simple. 

The ADAP Advocacy Association does not endorse one of these programs over another one, but rather encourages PLWHAs facing medical financial toxicity to consider all of the available options. Patient assistance programs reinforce the importance of the partnerships that exist between industry and non-industry partners, and any time is a good time to remind our community about them!

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.

Transportation Assistance Survey from the PAN Foundation

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The Patient Access Network (PAN) Foundation launched a transportation assistance pilot program earlier this year, called Treatment Transport. Through Treatment Transport, eligible patients received a stipend towards Lyft rides to doctors' appointments and to the pharmacy.

Click here to learn more about PAN's Treatment Transport FAQs.

Photo Source: U.S. News & World Report

 The Treatment Transport pilot program has ended, and PAN is seeking to gauge interest in expanding it in 2020. Please let PAN know your thoughts in this survey, which should take 5-7 minutes to complete. We hope you will respond by December 6, 2019.

Complete the PAN survey online at https://www.surveymonkey.com/r/WBWSJ2Z.

For additional information, please contact Amy Niles, Vice President, External Relations, PAN Foundation at aniles@panfoundation.org.



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.

Medicare's Low-Income Subsidy Program

By: Amy Niles, Vice President, External Relations, Patient Access Network (PAN) Foundation

Access to medically necessary healthcare is critical for successful patient outcomes, yet access is often impeded or blocked entirely by high deductibles, co-pays and coinsurance. These out- of-pocket (OOP) costs hit low-income seniors especially hard. For economically vulnerable Medicare beneficiaries and people with disabilities, the Low-Income Subsidy (LIS) program is a critical safety net that helps cover OOP costs for prescription drugs. The PAN Foundation's Issue Brief describes the LIS program, how it helps low-income seniors and people with disabilities, and what more can be done to ensure that OOP drug costs do not prevent these beneficiaries from getting the treatment they need.

WHAT IS THE LIS PROGRAM AND WHO IS ELIGIBLE?

All Medicare beneficiaries are eligible for prescription drug coverage through Medicare Part D drug plans. Medicare beneficiaries with low incomes and very few assets (e.g. bank accounts, stocks, bonds, etc.) as well as some people with disabilities may qualify for the LIS program, which helps cover OOP prescription drug costs. Also called “Extra Help,” the LIS program shields economically vulnerable and disabled beneficiaries from high OOP drug costs by helping them pay for monthly premiums, annual deductibles and co-payments for prescription medications obtained through Medicare prescription drug programs.[1]

The LIS program is divided into two parts: the “Full LIS program” and the “Partial LIS program,” and they differ based on who is eligible, how people enroll, and how much support the program provides for OOP drug costs.

To learn more about the LIS program, download the PAN Foundation's Issue Brief 11 - Medicare’s Low-Income Subsidy Program.

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.

Simplify the Search for Financial Assistance with FundFinder

By: Ayesha Azam, Senior Director of Medical Affairs, Patient Access Network (PAN) Foundation

We often hear that the road to financial assistance is difficult to navigate. Thousands of people living with life-threatening, chronic and rare diseases depend on financial assistance from charitable foundations to start and stay on treatment. These foundations provide a much-needed safety net for people—including those living with Hepatitis C and HIV/AIDS.

Until recently, people looking for charitable assistance had to manually monitor the status of disease funds across multiple organizations to find an available program. This placed an additional burden on patients, their families and healthcare teams.

To ease this burden, my colleagues at the Patient Access Network (PAN) Foundation developed FundFinder, a web-based app that streamlines the search for financial assistance by instantly notifying users when a program opens.

In addition to the PAN Foundation, FundFinder tracks information on program availability from the websites of seven other charitable foundations: CancerCare, Good Days, HealthWell, Leukemia and Lymphoma Society, Patient Advocate Foundation, Patient Services, Inc. and The Assistance Fund. The app is updated hourly to provide the most up-to-date information.

Users can access the free app from any web browser, tablet or smartphone by visiting fundfinder.panfoundation.org. After creating an account, users may subscribe to email or text message notifications and select specific disease funds to follow. When a followed fund opens, users will receive an alert indicating which foundation has available funding.

At PAN, we understand that a diagnosis often puts priorities in perspective. FundFinder helps simplify the search for financial assistance so patients can spend more time focusing on their health and wellbeing. I invite you to join the 4,500 FundFinder users who are saving time for what matters most. Sign up for FundFinder today.




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.

3rd Annual National Monitoring Report on HIV/HCV Co-Infection

By: Marcus J. Hopkins, Consultant, Community Access National Network

The Community Access National Network (CANN) will be hosting its 3rd Annual National Monitoring Report on HIV/HCV Co-Infection on Wednesday, September 19th, beginning at 2:00 p.m. EST. This annual report provides valuable information on the state of Hepatitis C (HCV) treatment coverage, harm reduction measures to prevent transmission of HIV and HCV, and, new to this year, a brief focus on HIV and HCV testing and treatment for individuals currently incarcerated and post-incarceration.

Returning this year are yours truly (as the Project Director for the HIV/HCV Co-Infection Watch and Medicaid Watch), and Amanda Bowes, Manager on the National Alliance for State and Territorial AIDS Directors’ (NASTAD) Health Care Access Team. New presenters for 2018 include Ayesha Azam, Senior Director of Medical Affairs at the Patient Access Network (PAN) Foundation, and Jack Rollins, Senior Policy Analyst at the National Association of Medicaid Directors.

At last year’s National Monitoring Report, I focused on the increase in coverage options for both the Ryan White and Medicaid programs, showing how treatment options have expanded across the country since 2015 (when the HIV/HCV Co-Infection Watch began). Mrs. Bowes provided more detailed information available about coverage, as well as NASTAD’s efforts to expand coverage for Hepatitis C (HCV) Direct-Acting Antivirals (DAAs) within the nation’s AIDS Drug Assistance Programs (ADAPs).

This year’s event is sponsored by the ADAP Advocacy Association, Gilead Sciences, Merck, Quest Diagnostics, Walgreens, and the Pharmaceutical Research and Manufacturers of America (PhRMA).

The 3rdAnnual National Monitoring Report on HIV/HCV Co-Infection can be attended either in person at PhRMA Headquarters in Washington, DC, or remotely for non-DC residents. Registration is free and can be done online. While registration is free, there is limited seating for those attending in person and advanced registration is required to attend.

Learn more at http://www.tiicann.org/events.html#091918cr.


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.

Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

In May 2018, drug pricing took center stage as the U.S. Department of Health & Human Services released its proposed Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs. It what has been characterized as "a way forward in fight against mushrooming costs,"[1] HHS has set the stage for an extremely important debate...and likely the most contentious battle on health policy since passage of the Affordable Care Act.

Photo Source: NBC WPSD-6

According to the Notice published in the Federal Register, HHS' blueprint covers multiple areas including, but not limited to:[2]

• Improving competition and ending the gaming of the regulatory process,
• supporting better negotiation of drug discounts in government-funded insurance programs,
• creating incentives for pharmaceutical companies to lower list prices, and,
• reducing out-of-pocket spending for patients at the pharmacy and other sites of care.

Comments on the blueprint were due on or before July 16, 2018.

The ADAP Advocacy Association endorsed two coalition letters submitted to HHS.

One letter, spearheaded by the Patient Access Network Foundation (PAN), "cautions against HHS undertaking policy changes without evidence-based research. HHS must be confident that any changes it makes will have the intended positive impact on individuals and families, with no unintended consequences that could harm patients and make prescription drugs less affordable and accessible."[3] PAN's letter was signed by 52 patient advocacy organizations, representing millions of patients with serious, life-threatening, chronic, complex and disabling conditions.

The other letter was a collaborative effort led by the HIV Health Care Access Working Group (HHCAWG), which represents over 100 national and community-based HIV service organizations representing HIV medical providers, public health professionals, advocates, and people living with HIV who are all committed to ensuring access to critical HIV- and Hepatitis C-related health care and support services.

We have compiled a listing of the comments submitted by some other organizations, which are available to download here:

• AIDS United
• American Academy of HIV Medicine (AAHIVM)
• Biotechnology Innovation Organization (BIO)
• HIV Health Care Access Working Group (HHCAWG)
• National Alliance of State & Territorial AIDS Directors (NASTAD)
• Patient Access Network Foundation (PAN)
• Pharmaceutical Care Management Association (PCMA)
• Pharmaceutical Research and Manufacturers of America (PhRMA)
• Southern AIDS Coalition (SAC) 
• Southern HIV/AIDS Strategy Initiative (SASI)
• The 340B Coalition
• Treatment Action Group (TAG)
• 340B Health

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[1] Aronson, Lauren (2018, July 13). Blueprint to Lower Drug Prices could offer a way forward in fight against mushrooming costs. The Hill. Retrieved online at http://thehill.com/blogs/congress-blog/healthcare/396883-blueprint-to-lower-drug-prices-could-offer-a-way-forward-in.
[2] A Notice by the Health and Human Services Department (2018, May 16). HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs. Retrieved online at https://www.federalregister.gov/documents/2018/05/16/2018-10435/hhs-blueprint-to-lower-drug-prices-and-reduce-out-of-pocket-costs.
[3] Naples, Maggie (2018, July 17). National Patient Advocacy Organizations Come Together to Respond to the HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket (OOP) Costs. Patient Access Network Foundation. Retrieved online at https://panfoundation.org/index.php/en/about-us/media-room/national-patient-advocacy-organizations-come-together-to-respond-to-the-hhs-blueprint-to-lower-drug-prices-and-reduce-out-of-pocket-oop-costs.

This New Insurance Loophole Could Affect People on HIV Meds, including PrEP

Guest Blog By: John Peller, President & CEO, AIDS Foundation of Chicago

Reprinted with Permission from AIDS Foundation of Chicago

Do you use a copay card to help pay for name-brand HIV drugs for treatment or PrEP? If you do, watch out: your insurance company might have a new policy that doesn’t let your copay card (a.k.a. your copay assistance card) help you afford your medications.

We’re talking about “copay accumulators” — policies some insurance companies are using that could make your health care more expensive, perhaps unaffordable. Read on for an overview of the problem and some steps you can take to make your medications affordable.

We are very concerned about the impact that these new insurance company policies will have on people’s health. We’ll do everything we can to fight them – but need your help. Are you having trouble getting medications because of insurance company policies? Tell us what’s going on by contacting www.speakup.hiv. We also recognized that insurance companies have put these policies in place because brand-name drugs are just too expensive. We’re committed to fighting for more affordable prices for life-saving medications.

What are copay accumulator programs?

Copay accumulators are relatively new policies that some insurance companies are using to stop counting drug company copay cards toward a person’s deductible or out-of-pocket maximum.  Note: These policies apply to drug manufacturer co-pay cards only, and not charitable assistance programs like the Patient Advocate Foundation, AIDS Drug Assistance Programs, or state-run programs that help pay for PrEP.

Which insurers are using copay accumulators?

Cigna, United Healthcare and pharmacy benefit managers CVS Caremark and Express Scripts have implemented these policies nationally for some plans. Warning: this list could grow.

Which medications are affected?

This new policy can apply to any brand-name drug with a copay program for any health condition, not just HIV for treatment or PrEP.

What does this mean for people in this situation?

Here’s where it gets complicated: Before copay accumulators policies were in place, the value of your copay card could be counted toward your deductible and out-of-pocket maximums. These cards could potentially save you a lot of money and make access to the health care you need easier and less stressful.

But if your insurance company has a copay accumulator policy and you are using a copay card to help pay for your medicine, when you reach your limit on the copay card, the total value on the card will not count toward your deductible or annual out-of-pocket maximum. If this policy is in place with your insurance company, you will need to pay your full deductible out of your own pocket before your insurance actually kicks in. This could mean that you’d be responsible for thousands of dollars to cover the cost of your health care and prescriptions.

Let’s walk through an example.

You start your new health plan year in January and you take a name-brand (non-generic) medication that costs $1,500 a month. Your plan has a $6,000 deductible (the amount you pay before the insurance plan starts paying for some care), and the deal is, you pay the full cost of all care (including drugs) before you meet your deductible. After you meet your deductible, your insurance company kicks in and starts paying for stuff.

The name-brand medication you take has a copay card, and that card is worth $6,000 per year. You use that copay card in January, February, March and April at the pharmacy to pay for your drug. By the time May arrives, your copay card has run out ($1,500 X 4 months=$6,000).

• The old way (no accumulator): Previously, the insurance company would have counted what the copay card paid towards your deductible. In this scenario, your deductible would be fully met by using the card. So, depending on the details of your insurance, you might not have to pay anything after meeting your deductible, or you might have to come up with a small fee for your medication, or a small fee for other things like office visits.

• The new way (with an accumulator): With a copay accumulator policy in place, the insurance company doesn’t count the amount of the copay card towards your deductible. When you go to fill your prescription in May, you will owe the full $1,500 cost of the drug, because your $6,000 deductible has not been paid down. You’ll need to keep paying the full cost of those  drugs yourself, out of your pocket, until you pay a total of $6,000 (four more months of drugs) and meet your plan’s deductible.

Will you be ready for an unexpected out-of-pocket cost?

We are very concerned that people may not know their insurance companies have changed their policy and may not be prepared to pay the full cost of their deductibles. While you might have received a letter from your insurer talking about copay accumulators, it may not have been completely clear what this new policy would mean for you.

So what can you do?

• Consult your health plan materials or call your insurer to ask questions. If you have been affected by this type of policy and have had to switch to another drug or have been unable to fill your prescription, tell your insurer. Ask your insurer to waive the policy (it never hurts to ask).

• Apply for help. The Patient Advocate Foundation (www.copays.org), Patient Access Network Foundation (www.panfoundation.org) or similar organizations can help you get your HIV medications for treatment or prevention. If you’re taking PrEP, you can also get help from PrEP4Illinois (www.prep4illinois.com), a state program that provides free PrEP medications.

• Tell us! We want to know about your experience so we can be better informed when we are advocating for you. Contact us at cgoode@aidschicago.org.

• Tell your employer, too. If you are employed and receive health insurance through your job, tell your employer. They may have adopted this program thinking of it as a cost-savings strategy without truly understanding the negative impact it could have on their employees.

Some helpful definitions:

The term accumulator refers to the running total of a person’s costs that apply toward their deductible and out-of-pocket maximum.

A deductible is the amount a person pays for health care services before insurance kicks in. For example, an individual with a $2,000 deductible would pay for their first $2,000 of care (including things like medications, office visits, lab tests) before health insurance begins to cover costs.

A copayment is a fixed amount a patient pays for a covered health service after they’ve paid their deductible. For example, you might pay a $20 copayment when you pick up medications at the pharmacy. Some insurance plans have copayments; some do not.

An out-of-pocket maximum is the most amount of money a person has to pay for covered services in a plan year. After this amount is spent on out-of-pocket costs (deductibles, copayments and coinsurance), a health plans pays 100% of the cost of covered benefits.

A high-deductible health plan is a plan with a higher deductible than a traditional insurance plan. The monthly premium is usually lower, but people pay more health care costs out of their own pocket before the insurance company starts to pay.

A pharmacy benefit manager is a third-party administrator of prescription drug programs contracted by health plans, employers and government entities to manage prescription drug programs.

A copay card can be provided by a pharmaceutical company (a.k.a. a manufacturer like Gilead) or a charity. These cards help patients afford the cost of their prescriptions. The amount of the patient’s copayment may be reduced or covered completely if they use a copay card.

Thanks to Cancer Support Community and The Arthritis Foundation for providing a version of this information. https://www.cancersupportcommunity.org/blog/2018/04/copay-accumulator-programs-whats-stake-patients



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.

PAN Foundation Opens HIV Prevention & Treatment Fund

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The Patient Access Network (PAN) Foundation — a corporate partner of the ADAP Advocacy Association — announced that it opened its fund for HIV Prevention And Treatment. Presently, there are 56 HIV-related medications covered by this program.

The PAN Foundation is accepting applications for new and renewal patients. People needing financial reprieve from the cost of their HIV-related medications are eligible for assistance up to $3,400 per year (additional assistance may be available, subject to the availability of funding). In fact, nearly 60 disease-specific assistance programs to help patients pay for their out-of-pocket costs are made available by the organization.

The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping underinsured patients with chronic and critical illnesses afford their out-of-pocket medical expenses. Over the last thirteen years, they have provided more than 700,000 underinsured patients with over $2.5 billion dollars in financial assistance.[1]

Patients and advocates can apply for PAN assistance by phone at (866-316-7263) or online (Click here to start the application online).

[1] Patient Access Network Foundation (2017).

Linkages to Care - Plugging the Treatment Gap: Navigating Patient Assistance Programs

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

In the United States, everyone hates how insurance companies "stick" it to consumers. There is pretty much universal agreement that the cost of prescription drugs are too high. There is also near consensus that the marketplace plans under the Affordable Care Act ("ACA") have caused a lot of headaches for patients with chronic conditions — including HIV/AIDS — especially with respect to the high tier drug plans. It is no wonder that so many cracks exist within the current healthcare framework. Fortunately, there also exist patient assistance programs ("PAPs") designed to plug the treatment gaps for these patients. PAPs serve as key linkages to care...and treatment!

According to PatientAssistance.com, "Commonly referred to as PAPs, Patient Assistance Programs are services offered by pharmaceutical companies for those who cannot afford their medication. Patient assistance programs are available to low-income individuals or families who are under-insured or uninsured and are provided to those who meet the eligibility guidelines. Assistance may range from reduced cost of drugs to free medicine. Each drug that a company offers will have its own unique program and may even have a different eligibility requirement than the other drugs they offer. As there is no unified standard of designation for these programs, you may also see them referred to as medication assistance programs, indigent drug programs, and charitable drug programs."[1]

Photo Source: MedicineCoupons.net

PAPs are vitally important to patients living with chronic conditions. They not only improve access to care and treatment, but they also save consumers money and reduce lost productivity. They also benefit the drug manufacturers because PAPs keep patients (would-be consumers) in treatment. The data shared by the Partnership for Prescription Assistance ("PPA") — which connects qualifying patients with the assistance program that’s right for them — is mind-blowing.

Celebrating its 12-year anniversary, PPA recently reported that its website is visited by over 75,000 consumers per month and makes available information on more than 475 patient assistance programs. It also offers a database of nearly 10,000 free or low-cost health care clinics across the country. Over 10 million consumers have been helped since the program's inception.[2]

Aside from the resources made available to consumers directly from the drug manufacturers, there also exists other patient-centric organizations designed to assist patients with prescriptions, discount drug cards, and other patient resources. Just to name a few, they include the Patient Access Network Foundation ("PAN"), Patient Advocate Foundation ("PAF"), and NeedyMeds. Each of these organizations serve as vital linkages to care for social workers, case managers, and allied health professionals assisting patients. These organizations also each partner with the ADAP Advocacy Association.

In an effort to raise awareness about patient assistance program and how they serve people living with HIV/AIDS and/or viral hepatitis, we will host an educational training webinar on May 31, 2017. The webinar, "Plugging the Treatment Gap: Navigating Patient Assistance Program," will showcase important information about these patient-centric PAPs. It will provide webinar attendees with a greater understanding about patient assistance programs, tools for how to navigate patient assistance programs to best assist patient needs, strategies for better seamless delivery of health-related care and treatment, and useful resources and tools to plug the treatment gap.

Registration is open to all stakeholders. Registration is complimentary for PASWHA members, and it is also complimentary for patients living with HIV/AIDS. Use this scholarship link if you are a patient living with HIV/AIDS applying for a webinar scholarship.

Additional information about the webinar is available online at https://www.123signup.com/event?id=nhjqn.


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[1] PatientAssistance.com (2014); The Catalyst; What are Patient Assistance Programs?; PatientAssistance.com, Inc. Retrieved from https://www.patientassistance.com/faq.html.
[2] Mooney, Hannah (2017, April 5); 12 years of the Partnership of Prescription Assistance; Pharmaceutical Research and Manufacturers of America®. Retrieved from http://catalyst.phrma.org/12-years-of-the-partnership-of-prescription-assistance.

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.

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 Patient Advocate Foundation, please visit www.patientadvocate.org.

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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.