New House Bill Would Require Insurers to Count Direct-to-Consumer Drug Purchases

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

A bill introduced by Representative Greg Murphy, M.D. (R-NC-03), would require insurers to count the cost of prescription medications purchased through direct-to-consumer platforms, such as the TrumpRX website (Hopkins, 2026), toward both deductibles and out-of-pocket maximums (Minemeyer, 2026).

Photo Source: Rep. Greg Murphy

The "Every Dollar Counts Act" (H.R. 8270), introduced in April 2026, would amend title XXVII of the Public Health Service Act, the Employee Retirement Income Security Act of 1974, and the Internal Revenue Service Code of 1986 to require out-of-pocket expenditures for drugs to count towards an individual’s deductible and out-of-pocket maximums. It does come with some caveats:

To count, the medication must be on the individual’s health plan’s formulary, meaning it would otherwise be covered by the insurance plan with a co-pay (Goldman, 2026).

"Direct-to-patient platforms have the potential to radically transform the drug marketplace, applying much-needed downward pressure on the extraordinary cost of lifesaving medicines. However, patients who are set to benefit most cannot apply their expenditures on drugs purchased through these platforms to their health insurance out-of-pocket contribution requirements. By making this possible, we are putting patients first and promoting competition to drive down costs further" (Murphy, 2026).

Photo Source: Congress.gov

Direct-to-consumer/patient platforms are becoming increasingly common since 2024, with numerous pharmaceutical companies and organizations, including Amgen (maker of Repatha), Eli Lilly (Zepbound), Novo Nordisk (Wegovy), Pfizer (Eliquis), AstraZeneca (Farxiga), Novartis (Cosentyx), Bristol Myers Squibb (Sotyktu), and PhRMA, the U.S. pharmaceutical lobbying group based in Washington, DC, going live with websites offering medications directly to patients, often at lower prices than what they would pay when using their commercial insurance (Constantino & Coombs, 2025).

The concept of direct-to-consumer sales isn’t new; but in an age when almost every medication purchase (in the United States) goes through complex chains of manufacturers, wholesalers, pharmacy benefits managers (PBMs), and pharmacies that then get filtered through another round of payors (e.g., commercial and public health insurers), consumers often have little idea of the true cost of their medications. More to the point, tiered prescription co-pays and the availability of manufacturer and commercial drug coupons, such as manufacturer patient assistance programs (PAPs) and GoodRx, make it difficult for patients to make informed decisions about the most affordable way to obtain their medications.

Patients have been sharing their stories on social media and in the press with their anecdotal encounters where they face a high-dollar sticker shock at the pharmacy register, only for their pharmacist to scan a different barcode behind the counter and come back with a significantly lower dollar amount (Fottrell, 2026).

Photo Source: Elements Magazine

GoodRx, founded in 2011, provides patients with a relatively easy-to-use website and smart phone app that allows patients to explore drug prices at various local pharmacies based on zip code. They also offer a subscription service, GoodRx Companion, that offers low-cost medications and savings on various medical services (GoodRx, 2026).

For consumers, this may seem like insurance, but GoodRx is quick to remind patients at every step that it is not health insurance; it is a collection of co-pay assistance coupons.

And this is the rub for many consumers: if they can get their prescription drugs this cheaply by scanning a QR Code, why should they ever have to pay a higher price?

This is an excellent question.

Why should American consumers be required to pay higher prices than any other nation for medications (Editor’s Note: Asking this question is not an endorsement of the deeply flawed Most Favored Nations proposed policy change)? Why should American consumers have copay accumulator programs that prohibit patient assistance program assistance from counting toward their deductibles? Why should American consumers be held captive in an endless labyrinth of ever-changing co-pays, surprise bills, and coverage denials for medications listed as being “covered”?

The answer is simple: because the “system” allows it.

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

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

References:

[1] Constantino, A. K. & Coombs, B. (2025, October 07). Healthy Returns: Amgen joins a growing list of drugmakers selling directly to consumers. Englewood Cliffs, NJ: CNBC: Health Returns. https://www.cnbc.com/2025/10/07/healthy-returns-amgen-other-drugmakers-launch-dtc-programs.html

[2] Every Dollar Counts Act, The, H.R. 8270, 119th Cong. (2026). https://www.congress.gov/bill/119th-congress/house-bill/8270

[3] Fottrell, Q. (2026, June 23). ‘It feels like a medical miracle’: How did a single QR code coupon cut my $618 Walgreens prescription to $15? New York, NY: MarketWatch: Personal Finance: The Moneyfist. https://www.marketwatch.com/story/it-feels-like-a-medical-miracle-how-did-a-single-qr-code-coupon-cut-my-618-walgreens-prescription-to-15-524a1151

[4] Goldman, M. (2026, April 14). Exclusive: GOP pushes sweetener for cash-pay drugs. Arlington, VA: Axios: Health. https://www.axios.com/2026/04/14/gop-cash-pay-drug-deductible

[5] GoodRx. (2026). GoodRx Companion. Santa Monica, CA: GoodRx: Companion. https://www.goodrx.com/companion

[6] Hopkins, M. J. (2026, January 22). Trump Administration Applauds Itself for Rx Access Agreements, But Will They Help Patients? Nags Head, NC: ADAP Advocacy: ADAP Blog. https://adapadvocacyassociation.blogspot.com/2026/01/trump-administration-applauds-itself.html

[7] Minemeyer, P. (2026, April 14). Bill would force payers to apply DTC drug purchases to patient deductibles. New York NY: Fierce Healthcare: Regulatory. https://www.fiercehealthcare.com/regulatory/bill-seeks-force-payers-apply-dtc-drug-purchases-patient-deductibles

[8] Murphy, G. F. (2026, April 14). Murphy Introduces Legislation to Lower Out-of-Pocket Costs for Drugs. Mantea, NC: U.S. Congressman Gregory F. Murphy, M.D.: Media: Press Releases. https://murphy.house.gov/media/press-releases/murphy-introduces-legislation-lower-out-pocket-costs-drugs

Injurious Tactics Associated with Alternative Funding Programs are Growing

By: Ranier Simons, ADAP Blog Guest Contributor

Barriers to accessing prescription medications, especially specialty drugs, is a constant challenge for many patients in the healthcare expenditure ecosystem. It is made more complicated by the constant tug-a-war between public payors, insurance companies, pharmacy benefits managers (PBMs) and drug manufacturers over cost. Unfortunately, patient harm is often the collateral damage of the insurers attempting to cut costs while maximizing profits. To save money, alternative funding program (AFP) utilization by insurers and PBMs is a gimmick increasing in popularity. The injurious tactics associated with AFPs are growing, and more data is being collected regarding the problems they are causing patients.

Photo Source: MMIT

A recent study indicated that 75% of employers utilizing AFPs plan to continue their use, with one in three large employers considering using them in the future (Doxey & Balicki, 2024). AFPs operate by partnering with employers to fraudulently, for their profit, utilize programs offered by drug manufacturers and private charitable entities that are in place to help needy patients. It also targets certain public safety net programs, such as State AIDS Drug Assistance Programs (ADAPs).

They do this by manipulating employer plans to take advantage of copay assistance programs, patient assistance programs (PAP), and even international mail orders. In return for employers saving money, patients are suffering. A patient experience study involving a survey of 227 patients utilizing AFPs showed that 88% reported stress and anxiety due to medication uncertainty due to coverage denial, the average wait time to receive medication was 68.2 days, and 24% explained the delay caused them adverse side effects including worsening of their condition (Wong et al., 2024).

One of the most dangerous AFP practices is drug importation. In this case, AFPs force patients to take non-FDA-approved drugs from overseas. They, in essence, broker personal drug importation between patients and unlicensed illegal foreign pharmacies (Partnership for Safe Medicines, 2024). First and foremost, in most circumstances, personal importation of drugs and devices into the U.S. is illegal (FDA, 2024). In the narrow instances where the FDA allows some permissible discretion with importation, the expectation was for specific individual needs. It was not for large-scale utilization by employers and AFPs. As explained by Shabbir Imber Safdar, Executive Director of the Partnership for Safe Medicines (PSM), “Employers participating in these plans are opening themselves up to enormous legal liability when they encourage their employees to take a risk with their medical care in order to save the employer a few dollars.”

Photo Source: Partnership for Safe Medicines

Under the drug importation scheme, AFPs convince employers to carve out expensive and specialty medications from coverage to source them from outside of the United States for lower prices (Partnership for Safe Medicines, 2024). Patients using these self-funded employer plans are told they must agree to foreign-sourced medication to receive their needed therapies. To avoid violating essential health benefit (EHB) coverage laws, some employers simply encourage patients to use foreign-based medications instead of carving out medications from coverage. Employers explain to patients that they will pay less money if they buy the foreign drugs in comparison to what they’d be charged by the plan otherwise. 

The foreign sources used to obtain these medications are outside of the U.S. Drug Supply Chain Security Act tracking system known as “track and trace” (Partnership for Safe Medicines, 2024). As such, patients are in danger of receiving dangerous counterfeit drugs or drugs that have not been appropriately handled. Safdar says, "These medicines are not inspected or approved by the U.S. Food and Drug Administration. Their packaging and safety instructions are not the same as the U.S. product, if they're even real at all, and they're dispensed by unlicensed foreign businesses." Patients have no protection or recourse if they are harmed by counterfeit or poorly handled foreign-sourced medication. Additionally, the medications most commonly targeted for AFP drug importation schemes are used to treat asthma, cancer, epilepsy, hepatitis, HIV, pulmonary hypertension, and organ rejection (Partnership for Safe Medicines, 2024). These vulnerable populations could suffer fatal harm from counterfeit or ineffective medications.

Using the Freedom of Information Act (FOIA), PSM analyzed 16 towns and school districts, identifying over $4 million of imported medication invoices. Employers are enticed by the cost savings presented by AFPs. In one city, PSM found that the base cost of one Trulicity prescription was $1,100.00 without foreign drug importation and only $438.00 with the drug being imported. Several widely used HIV antiretrovirals were also found on these invoices: Biktarvy, Dovato, Genvoya, and Descovy. Employers that utilize the AFP drug importation programs pay fees to the AFPs. Safdar further explains that employers usually pay a percentage of the perceived “savings” difference between the regular market costs of the drugs compared to the foreign import costs. Thus, employers are spending money for the program in addition to what they are paying to purchase the imported drugs. AFPs are purely profit-driven and are not in service of helping patients.

All AFP schemes are predatory, whether they are exploiting PAPs, utilizing copay accumulators, or foreign drug importation schemes. However, AFPs are also discriminatory. Specifically, they are discriminatory against low-income patients. The PAPs that AFPs exploit, whether they be a manufacturer or charitable organization, usually have income threshold requirements. Thus, the patients likely to be approved for the programs are those with lower incomes (Prescription, 2023). Employees with higher incomes will not qualify, and subsequently, the employer plan will end up covering their medication under standard cost-sharing. However, the lower-income employees are forced to remain on the AFP-obtained PAP.

Photo Source: Optum for Business

In this manner, lower-income employees face higher barriers to medication access. However, they are paying the same premiums as other employees whose income disqualifies them from utilizing fraudulent PAP enrollment (Prescription, 2023). Low-income employees are subject to delays due to mail-order pharmacy requirements and the stress of navigating the bureaucracy of application and approval of the PAP access via the AFP. Employees on standard covered medications can start their treatment immediately upon receiving a prescription from their doctor. Patients prescribed “carved-out” medications are subject to suboptimal care.

Patients expect the insurance plans they pay for to provide the coverage they need. By utilizing deceptive AFPs, employers with self-insured health plans, both large and small, do not fulfill their fiduciary duties nor the promise of patient care. For the sake of profit, AFPs endanger patients' health and well-being, impede patient assistance entities' ability to provide help to those genuinely in need and violate the law. Outlawing them will protect the vulnerable workers they exploit and add some stability to the presently fragile healthcare ecosystem.

[1] Doxey, P., Balicki, C. (2024). The Present and Future of Alternative Funding Programs for Specialty Drugs. Retrieved from https://leavittpartners.com/the-present-and-future-of-alternative-funding-programs-for-specialty-drugs/

[2] The Partnership for Safe Medicines. (2024). Alternative Funding Programs: Offshoring patients, importing risks. Retrieved from https://www.safemedicines.org/2024/04/afps-offshoring-patients-importing-risks.html

[3] Prescription for Better Access. (2023, November 17). 12: How Alternative Funding Programs Exploit Patient Assistance Programs (Podcast). Retrieved from https://prescriptionforbetteraccess.com/12-how-alternative-funding-programs-exploit-patient-assistance-programs/

[4] United States Food and Drug Administration. (2024, October 8). Personal Importation. Retrieved from https://www.fda.gov/industry/import-basics/personal-importation

[5] Wong, W. B., Yermilov, I., Dalglish, H., Bienvenu, L., James, J., & Gibbs, S. N. (2024). A descriptive survey of patient experiences and access to specialty medicines with alternative funding programs. Journal of managed care & specialty pharmacy, 30(11), 1308–1316. https://doi.org/10.18553/jmcp.2024.30.11.1308

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. 

Copay assistance is a lifeline for patients. So why are insurers blocking it?

By: Stephen J. Ubl, President & Chief Executive Officer with the Pharmaceutical Research and Manufacturers of America (PhRMA)

****Reprinted with permission from the Pharmaceutical Research and Manufacturers of America****

In today’s broken insurance system, patients too often pay more for a medicine than what their insurance company pays.

While the prices insurers pay for brand medicines increased just 1.0% last year, too many patients still face unaffordable costs for life-saving treatments. In fact, commercially insured patients with a deductible have seen their out-of-pocket costs for brand medicines increase 50% since 2014.

This erosion in insurance coverage may be discouraging patients from using the medicines prescribed by their doctors, and the consequences can be devastating. In 2021, 61% of commercially insured patients did not fill their new prescription when their out-of-pocket costs exceeded $250.

Photo Source: PhRMA

That is why PhRMA supports a holistic solution to lower drug costs for patients. Until we address the roles insurers and pharmacy benefit managers play in deciding how much people pay at the pharmacy, there will still be individuals who struggle to afford their medicines.

In the absence of these broader reforms, many drug manufacturers offer help through patient assistance programs. When insurance falls short, this assistance aims to help patients take their medicines as prescribed by their doctors.

Research has found that those who use patient assistance were up to 47% more likely to stick with their treatment for a year. This lifeline is especially critical for individuals with chronic conditions. In 2019, they helped patients taking brand HIV or oncology medicines save $1,600 on average. Patients taking multiple sclerosis medicines saved an average of $2,200.

How Insurers Are Actively Undermining Patient Assistance

Unfortunately, insurers are adopting tactics that can deny patients the benefit of this assistance. Not only are insurers reducing coverage, they are coming between patients who need help and the assistance available to them. For example, insurers use accumulator adjustment programs, which exclude patient assistance from counting toward a patient’s deductible and out-of-pocket maximum. This forces patient to pay more and more out of pocket before their insurance coverage begins.

The intent of insurers is clear. These programs attempt to steer patients towards medicines insurers prefer instead of those that doctors prescribe. Not surprisingly, steering patients away from their prescribed medicines can steer them toward worse health outcomes.

In a survey, more than half of insurance companies acknowledged that accumulator adjustment programs can negatively impact whether a patient uses their medication as prescribed. Evidence shows that patients impacted by accumulator adjustment programs are 13 times more likely to stop taking a treatment as compared to those with consistent copays.

In some ways, patient assistance is similar to the support hospitals provide when they waive a patient’s out-of-pocket expenses. Taxpayer-funded incentives encourage this kind of hospital assistance. Yet the patient assistance many rely on for life-saving medicines is under assault by insurers.

Pushing Forward Patient-Centered Solutions

In a win for patients, a federal district court judge recently struck down a rule that would have made it more difficult for manufacturers to offer patient assistance. The federal judge noted that patient assistance can help people “shoulder high out-of-pocket costs and obtain needed medications that their doctors have prescribed.” The judge also described accumulator adjustment programs as “schemes” devised by health insurers to “pocket for themselves at least some of the assistance” that’s meant for patients.

Fortunately for patients, lawmakers are also taking notice. Since 2019, 15 states have banned accumulator adjustment tactics in state-regulated markets. At the federal level, a bipartisan bill was introduced to ban accumulator adjustment programs in many commercial health plans. Congress should build on the recent federal judge’s decision and rein in the use of accumulator programs.

Patient assistance offers a lifeline, but if insurance worked like insurance – covering the sick when they need care – patients wouldn’t have to rely on this assistance to afford the out-of-pocket costs for their medicines.

We need to solve systemic flaws that are driving up costs for patients in the first place. For example, insurers and PBMs pocket billions of dollars in rebates and discounts that are provided by drug manufacturers. These savings should be shared with patients at the pharmacy, but instead, many patients are forced to pay more for medicines than their insurance company pays.

Whether it’s through high out-of-pocket costs or accumulator adjustment policies, insurers are getting in between patients and their medicines. We should be doing everything we can to remove these barriers so people can access the health care they need. And until then, let’s remove barriers to patient assistance to help make medicines more affordable for those in need.

Stephen J. Ubl Stephen J. Ubl is president and chief executive officer of PhRMA. Mr. Ubl leads PhRMA’s work preserving and strengthening a health care and economic environment that encourages medical innovation, new drug discovery and access to life-saving medicines. Ubl is recognized around the world as a leading health care advocate and policy expert who collaborates successfully with diverse stakeholder groups – including patient and physician groups, regulators, public and private payers, and global trade organizations – to help ensure timely patient access to innovative treatments and cures.

This opinion piece was also published in the June 29th edition of the Catalyst.

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.  

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.

Co-Pay Accumulators are an Extremely Dangerous, Anti-Patient Policy

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

Today's lexicon outside healthcare policy discussions probably doesn't include the words, co-pay accumulators. But that is slowly changing as more and more people encounter what is widely recognized as an extremely anti-patient health insurance policy. Co-pay accumulators amount to nothing more than the greedy health insurance industry (and other payers) making prescription drug coverage less affordable for patients, especially for those living with chronic health conditions such as HIV/AIDS.

The Hepatitis B Foundation defines a copay accumulator (or accumulator adjustment program) as "a strategy used by insurance companies and Pharmacy Benefits Managers (PBMs) that stop manufacturer copay assistance coupons from counting towards two things: 1) the deductible and 2) the maximum out-of-pocket spending."[1]

Last year in the ADAP Blog, guest contributor Marcus J. Hopkins provided an excellent description on these potentially harmful policies: "Essentially, what a co-pay accumulator attempts to do is increase the amount of money consumers pay in order to decrease the amount of money insurers have to pay, once their annual deductible and/or Out-of-Pocket Maximum (OPM) is met. When consumers are allowed to count co-pay assistance cards against their deductible/OPM, they reach those limits sooner, meaning that insurers are then on the hook for every pharmaceutical fill after that date."[2]

Photo Source: Bankrate

Co-pay accumulators are particularly problematic for the HIV community because they rely on specialty drugs, such as anti-retroviral medications. In 2018, Dr. Adam J. Fein with the Drug Channels Institute warned, "Patients today are being asked to pay a significant share of prescription costs for more-expensive specialty drugs, because of high coinsurance amounts."[3]

Unfortunately, increasingly health insurance companies and PBMs have elected to institute co-pay accumulators. Make no mistake about it, but these co-pay accumulators will lead to patients being unable to afford their medication...and that will lead to less medication adherence...and that will lead to higher costs for the entire healthcare system. Our response is simple: It is time to advocate for the patient!

The AIDS Institute recently published an in-depth report, "Double Dipping: Insurance Companies Profit at Patients' Expense - An Updated Report on Copay Accumulators." According to the report's findings, in 45 states and the District of Columbia, there is at least one plan with a copay accumulator adjustment policy.[4]

For people living with chronic health conditions, such as HIV or viral hepatitis, co-pay accumulators generally pose significant problems for patients. As the report highlights: "With the many crises plaguing our health care system today, this very confusing issue can easily be dismissed. However, for the patients it affects, it simply cannot be ignored. And for those who haven’t experienced a copay accumulator yet, it may only be a matter of time."[5]

The problem for patients is much broader, though. According to the Patient Access Network Foundation (PAN), more than 10 percent of seniors shared that they took on credit card debt to afford prescriptions, while nearly 20 percent of seniors said they reduced spending on everyday purchases, including groceries and transportation.[6]

Photo Source: PAN Foundation

The Biden-Harris Administration recently had the opportunity to pump the brakes on co-pay accumulators, similar to the way they stopped the harmful demonstration project designed to weaken the six protected drug classes under Medicare's Part D. They failed to so, and the patient advocacy community was quick to express its concern.

“We are deeply disappointed that CMS passed on addressing the issue of copay assistance for prescription drugs and requiring insurers and pharmacy benefit managers to count assistance towards patient out-of-pocket cost-sharing and deductibles,” commented Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. “Even before COVID-19, patients were struggling to afford their medications and relied on copay assistance from drug manufacturers. Now, the need is even greater. We know that the Biden-Harris administration wants to improve patient affordability of healthcare, particularly for vulnerable communities; however, they missed a perfect opportunity to demonstrate this commitment.”[7]

In a recent letter, U.S. Representatives A. Donald McEachin (VA-04) and Rodney Davis (IL-13) asked President Biden to halt the Trump Administration's copay accumulator policy ― which was included in the 2021 Notice of Benefit and Payment Parameters (NBPP).[8] It is now left in the hands of the Congress to reverse course on the extremely dangerous, anti-patient policy known as co-pay accumulators. Patient health depends on it!

[1] Hepatitis B Foundation (2020, March 4). Copay Accumulators – What They Are and What They Mean For Your Prescriptions. Retrieved online at https://www.hepb.org/blog/copay-accumulators-mean-prescriptions/#:~:text=A%20copay%20accumulator%20–%20or%20accumulator%20adjustment%20program,the%20deductible%20and%202%29%20the%20maximum%20out-of-pocket%20spending.

[2] Marcus J. Hopkins (2020, July 16). CMS Co-Pay Accumulator Rule Aims to Increase Consumer Costs. The ADAP Blog. ADAP Advocacy Association. Retrieved online at https://adapadvocacyassociation.blogspot.com/2020/07/cms-co-pay-accumulator-rule-aims-to.html.

[3] Adam J. Fein, Ph.D. (2018, January 3). Copay Accumulators: Costly Consequences of a New Cost-Shifting Pharmacy Benefit. Drug Channels. Retrieved online at https://www.drugchannels.net/2018/01/copay-accumulators-costly-consequences.html.

[4] The AIDS Institute (March 2021). Double Dipping: Insurance Companies Profit at Patients' Expense - An Updated Report on Copay Accumulators. Retrieved online at https://aidsinstitute.net/documents/2021_TAI_Double-Dipping_Final-031621.pdf.

[5] The AIDS Institute (March 2021). Double Dipping: Insurance Companies Profit at Patients' Expense - An Updated Report on Copay Accumulators. Retrieved online at https://aidsinstitute.net/documents/2021_TAI_Double-Dipping_Final-031621.pdf.

[6] Amy Niles (2021, April 19). Morning Consult survey: high out-of-pocket costs causing concern for seniors. PAN Foundation. Retrieved online at https://www.panfoundation.org/high-out-of-pocket-costs-causing-concern-for-seniors/. 

[7] Carl Schmid (2021, April 30). Biden Administration Passes on Protecting Patient Affordability of Medications. HIV+Hepatitis Policy Institute. Retrieved online at https://hivhep.org/press-releases/biden-administration-passes-on-protecting-patient-affordability-of-medications/.  

[8] The Honorable A. Donald McEachin (2021, March 22). McEachin Leads Bipartisan Letter Asking President Biden to Reverse Previous Administration’s Copay Accumulator Policy. The Office of U.S. Representative A. Donald McEachin (VA-04). Retrieved online at https://mceachin.house.gov/media/press-releases/mceachin-leads-bipartisan-letter-asking-president-biden-reverse-previous.

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.

PAF’s Co-Pay Relief Expands Assistance to Cover Insurance Premiums (including HIV/AIDS Fund)

By: Beth Moore, Executive Vice-President of Corporate Communications, Patient Advocate Foundation

Beginning on March 1, 2021, Patient Advocate Foundation’s (PAF) Co-Pay Relief (CPR) program will be expanding its assistance to cover health insurance premiums through their COVID-19, Cystic Fibrosis, and HIV/AIDS & Prevention funds. CPR can directly reimbursement patients for insurance premiums or can pay their insurance premiums directly to their insurance provider. 

Current, new and renewal patients will be able to use their grant award to pay for expenses related to individual medical insurance premiums and to co-payments, co-insurance and deductibles required by the patient’s insurer for medications prescribed to treat and manage their illness. Spouse or family, nor dental or vision plan premiums can be covered by the fund. 

To learn more, or to apply for assistance, either visit https://copays.org/portal/#/login, with access available for patients, providers, and pharmacies, or call our dedicated CPR team toll-free at 866-512-3861. You will know immediately upon completion of the application if you are eligible for assistance, and upon approval you are able to begin using your award right away.          

The Co-Pay Relief Program may help with all therapeutic and supportive medications, including generic or bioequivalent products prescribed to treat and/or manage the patient’s disease or condition. The program helps patients on a first-come, first-serve basis and processes applicants in the order in which their completed applications are received. 

PAF Disclaimer: Enrollment in and financial assistance from any disease-specific fund is provided on a first come, first serve basis to the extent funding is and remains available. PAF will not consider the identity of any physician, provider, supplier of items or services, donor, drug therapy, services or supplies being utilized or the referral source when assessing whether an applicant is qualified for financial assistance from a PAF CPR disease-specific fund. Under no circumstances will PAF recommend or refer an applicant or enrollee to any fund donor, provider, supplier, or product. 

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Welcome to Co-Pay Relief!

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.

MAT Provides Patients with More Transparency Around Medicine Costs

By: Emma Berry, Advocacy & Strategic Alliances, PhRMA

*** Reprinted with permission from the Pharmaceutical Research and Manufacturers of America® ***

Patients have enough to worry about right now. Figuring out how to pay for prescriptions shouldn’t be another stressor. For decades, PhRMA has been committed to advocating for policies that help patients access the medicines they need, and now America’s biopharmaceutical companies are also individually expanding their assistance programs to help more patients during these uncertain times. The Medicine Assistance Tool (MAT) can match patients with resources and cost-sharing programs that may help lower out-of-pocket costs, whether or not you have insurance.

MAT is a free-to-use search engine designed to help patients, caregivers and health care providers learn more about the resources available through the various biopharmaceutical industry programs. While MAT is not its own patient assistance program, it does contain information on many of the patient assistance resources that the biopharmaceutical industry offers, including 900+ programs offered by PhRMA’s members companies to help qualifying patients, such as those who need financial support due to their lack of insurance or inadequate prescription medicine coverage.

Photo Source: PhRMA

Here is how you can use MAT to learn more about resources and cost-sharing assistance programs:

• Go to MAT.org and select whether you are a patient, loved one or health care professional
• Enter the name of the medicines you, your loved one or your patient are prescribed
• Enter your personal information or that of your loved one or patient (i.e. age, location, income, insurance coverage and household size)*

After following these steps, MAT will produce search results that identify programs and resources that might be able to help you.

Additionally, the MAT site also includes links to the websites referenced in company television advertising, where information about the costs of the prescription medicines is available. These websites may include information such as the list price of the medicine, out-of-pocket costs and other context about the potential costs of the medicine. The information provided by MAT can help people learn more about the costs surrounding their medicines, as well as provide resources to help them better navigate their insurance coverage. 

*Disclaimer: Please note any information provided is not saved and is kept strictly confidential and will not be used to for any purpose other than providing the search results.

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. 

HIV/AIDS Fireside Chat Retreat in Virginia Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Richmond, Virginia among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS. The Fireside Chat took place on Thursday, September 12th, and Friday, September 13th. Medicaid Expansion, Ryan White HIV/AIDS Program ("RWHAP"), and Patient Assistance Programs (PAPs) were dissected by 23 diverse leaders in the fight against the HIV/AIDS epidemic.

Photo Source: Getty Images

The Fireside Chat included moderated white-board style discussion sessions on the following issues:

• Medicaid Expansion: Implications for Access to Care & Service Delivery for PLWHA in Virginia — moderated by Dr. Kathleen A. McManus, Department of Medicine,University of Virginia
• Ryan White Program: Impact to Service Delivery under Trump's Plan to Eliminate AIDS by 2030 — moderated by Jeffrey S. Crowley, O'Neill Institute for National and Global Health Law, Georgetown Law
• Access to Care: How Patient Advocacy Groups & Patient Assistance Programs Fill Treatment Gaps for PLWHA — moderated by Alan Richardson, Patient Advocate Foundation

The discussion sessions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat. The following represents the attendees:

• Carnelle Adkins, Lead Case Manager, Capital Area Health Network
• William E. Arnold, President & CEO, Community Access National Network (CANN)
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Dawn Patillo Exum, Director, Public Policy, MERCK
• Kathie Hiers, President & CEO, AIDS Alabama
• Lynea Hogan, Virginia Consumer Advocate
• Lisa Johnson-Lett, Treatment Adherence Specialist /Peer Educator, AIDS Alabama
• Diana Jordan, Director of Disease Prevention, Virginia Department of Health
• Darnell Lewis, Local Coordinator ACCELERATE, TCC Group
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Kathleen McManus, Physician, University of Virginia
• John Minneci, Regional Account Executive, ViiV HealthCare
• Herminia Nieves, Assistant Director of Medication Access, Virginia Department of Health
• Theresa Nowlin, Massachusetts Consumer Advocate
• Juan Pierce, Virginia Consumer Advocate
• Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
• Josh Robbins, Owner, BNA Talent Group & The BRANDagement
• Kimberly Scott, Director of HIV Care Services, Virginia Department of Health
• Matt Sheffield, Director, Government Affairs, Thera Technologies
• Robert Skinner, President & CEO, Valley AIDS Information Network
• LaWanda Wilkerson, North Carolina Consumer Advocate
• Marcus Wilson, National Policy & Advocacy Director, Johnson & Johnson
• Jennifer Zoerkler, Executive Director, VHO

The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

Medicaid Expansion:

Dr, Kathleen McManus summarized how Medicaid expansion under the Affordable Care Act has played a major role in the uninsured rate declining from 18% to 14% among people living with HIV/AIDS. In Medicaid expansion states the decline was event more visible, down from 14% to only 7% (with Ryan White clients classified as uninsured clients). In Virginia, for example, Medicaid eligibility was one of the most restrictive programs in the nation.

That said, barriers remain under Medicaid expansion. Sometimes more restrictions exist under Medicaid, such as closed drug formularies (often times more restrictive than ADAP drug formularies), mail-order pharmacy requirements, or providers being out-of-network. The ongoing challenges also remain with insurance carriers dropping plans under the ACA's marketplace. Some potential strategies to combat challenges created by the uncertain insurance market included state health departments leveraging existing relationships with insurance carriers, as well as increasing peer-to-peer education. The National Alliance of State & Territorial AIDS Directors ("NASTAD") has made available several important resources to help state health departments and Ryan White Programs navigate the Medicaid expansion landscape.

Medicaid expansion in Virginia has raised some important questions, including transitions for existing ADAP clients, access to care with Medicaid Managed Care Organizations, and upcoming Medicaid work requirements. “The Graying of HIV” was central throughout the Medicaid expansion discussion.

The following materials were shared with retreat attendees:

• Kaiser Family Foundation: Medicaid and HIV
• The Body: What Medicaid Work Requirements Might Mean for People With HIV
• Daily Press: It will be years before Virginia Medicaid program makes people work, and Republicans aren’t happy (May 22, 2019)
• HIV/AIDS Bureau Policy: Clarifications Regarding the Use of Ryan White HIV/AIDS Program Funds for Health Care Coverage Premium and Cost Sharing Assistance

The ADAP Advocacy Association would like to publicly acknowledge and thank Kathleen for facilitating this important discussion.

Ryan White Program:

The Ryan White HIV/AIDS Program was discussed as a follow-up to the Michigan Fireside Chat, mainly as it relates to the Administration's plan to End the Epidemic by 2030 (EtE) initiative. As a foundational point for this discussion, some important facts were shared on why is the Ryan White Program needed if people with HIV have health insurance coverage, especially its role in leading the way in getting people with HIV virally suppressed by ensuring stable access to HIV primary care and medication, along with critical support services. Some of the issues touched upon included the impact of the uneven Medicaid expansion landscape from state-to-state, ADAP-funded insurance premium assistance, and mental health.

The EtE's targeted approach focuses on 46 counties in the United States, which account for over half of the new infections (there are over 3,000 counties nationwide). It was widely recognized that the plan does include a significant down payment to fund the initiative, but concerns linger over the ongoing assault on the Affordable Care Act. The Administration's plan also provided the opportunity to evaluate the ongoing rise in sexually transmitted diseases, which include worrying trends (22% increase in Chlamydia, 67% increase in Gonorrhea, and 80% increase in Syphilis). Additionally, PrEP was discussed as a way to improve population-level outcomes.

Photo Source: CDC

Finally, there was considerable discussion over the emerging controversy surrounding the use of cluster detection to pinpoint HIV hotspots. Whereas many health departments and public health professionals applaud using cluster detection (described as a tool), many patient advocates and people living with HIV/AIDS are increasingly alarmed over it. Emerging concerns include privacy, stigma, and criminalization.

The following materials were shared with retreat attendees:

• What is ‘Ending the HIV Epidemic: A Plan for America’?
• HRSA Congressional Justification, FY 2020: See Ryan White Program section, pages 228-265
• ACHIEVING SUFFICIENT SCALE OF PrEP USE IS CRITICAL TO ENDING THE HIV EPIDEMIC
• THE US STI CRISIS
• USING CLUSTER DETECTION TO END THE HIV EPIDEMIC

The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey for facilitating this important discussion.

Patient Assistance Programs:

Earlier this year the Patient Advocate Foundation ("PAF") blogged about Navigating the Costs of HIV Care – Conversations, Resources & Patient Experience, which summarized two online survey assessments of patients to identify root causes of financial toxicity including preferences towards cost conversations, degree and sources of financial stress. These surveys provided an important backdrop of this discussion about patient assistance programs ("PAPs").

The complexity of the nation's healthcare system and safety net programs often create "gaps" and the potential for patients to fall through them, thus losing access to timely, appropriate care and treatment. PAPs often provide the necessary resources to fill many of the care and treatment gaps. Some of the programs discussed included co-payment relief programs, case management services, and patient navigator programs.

Photo Source: PAF

Questions asked included what are manufacturer free drug programs and how do they operate, what are Coupon Cards and how do they work, and what is the difference between a manufacturer free drug program and charitable co-pay programs? Aside from the services provided by PAF, other patient resources offered by different organizations were also discussed, including the PAN Foundation, NeedyMeds, and PhRMA.

The following materials were shared with retreat attendees:

• Who Provides Patient and Health Advocacy?
• Ten Key Skill Sets of Health Care Advocates
• How a Patient Advocate Helps You Navigate the Medical System
• Patient advocates’ role expands to meet healthcare’s increasingly complex demands
• Patient Advocacy for Beginners
• HIV, AIDS & Prevention CareLine
• Hepatitis C CareLine

The ADAP Advocacy Association would like to publicly acknowledge and thank Alan for facilitating this important discussion.

Additionally, a special thank you is extended to Diana Jordan, Kimberly Scott and the entire Virginia Department of Health for their assistance during our stay in Richmond, VA.

Additional 2019 Fireside Chats are planned in New York, New York.

CMS Declines To Enforce New Co-Pay Rules It Put In Place

By: Marcus J. Hopkins, Policy Consultant

One of the arguably good changes brought forth by the Affordable Care Act (ACA; AKA – Obamacare) was the ability to use Ryan White (RW) Part B funds to purchase and pay private insurance premiums and co-pays for AIDS Drug Assistance Program (ADAP) clients. This, in addition to shifting some clients off of RW and onto state Medicaid programs in those states that expanded Medicaid, allowed state RW programs to shift some expenditures and costs off of their budgets by no longer paying directly for medications and, in some states, treatment costs.

One of the negative consequences of the ACA’s implementation has been the creation and proliferation of so-called “Co-Pay Accumulator Programs” – management tools used by Pharmacy Benefit Managers (PBMs) and other health plans that excludes co-pay assistance coupon and program payments from counting toward patients’ deductibles (Schweitz, 2019). This concept essentially allows insurers and PBMs to accept the payments received from the utilization of these co-pay coupons and Patient Assistance Programs (PAPs), not count those payments toward patients’ deductibles, and later demand and collect additional deductible payments after the co-pay assistance runs out for patients.

This practice has been widely criticized in a time when pharmaceutical prices have been (rightly) deemed out of control, too high, and unconscionable. Patients rely upon these manufacturer coupons, PAP assistance, and other discount programs to reduce the high cost of drug co-pays to as little as $5 or no cost from potentially hundreds of dollars per medication fill.

Photo Source: AIMED ALLIANCE

The current administration has repeatedly promised that it would lower the cost of prescriptions, though it has done little to deliver on said promise. One of the few positive steps it had taken was the announcement in its 2020 Notice of Benefit and Payment Parameters rule that “…co-pay assistance from drug companies must count towards a patient’s deductible and out-of-pocket maximum in most cases.”

That decree lasted about as long as any other policy decree from this administration.

On August 26th, 2019, the Center for Consumer Information and Insurance Oversight (CCIIO) released an FAQ (found here) stating that this rule, set to go into effect on January 1st, 2020, will now not be enforced, nor will states be required to enforce the pro-patient rule, because enforcing it might conflict with rules set forth by the Internal Revenue Service (IRS) that allows High Deductible Health Plans (HDHPs) to not count co-pay assistance toward deductibles.

Photo Source: CMS

So, essentially, the health insurance companies win.  Again.  And again.  And again.

ADAP funds may be used to pay for clients’ co-pays, premiums, or both, depending upon the state, and for those clients who live in states where ADAP only pays for premiums, they may rely upon co-pay coupons to afford their medication co-pays.

To put this in personal terms, my Biktarvy (Gilead) co-pay is $250/month. Because I live in WV, the state covers that co-pay amount. However, if I lived in another state where that wasn’t the case, I could potentially use Gilead’s Advancing Access® Medication Co-Pay Card, which pays $3,600 annually toward co-pay costs. That amount would pay for 14 months of my $250 co-pay, essentially delivering a medication for free for an entire year…unless the PBM that services the insurance plan’s prescription program uses a Co-Pay Accumulator Program, so that none of those medication co-pays count toward my deductible.

For anyone who thinks that this move by the Centers for Medicare and Medicaid Services (CMS) is an accident, don’t kid yourself: this isn’t a glitch; it’s a feature. This administration’s CMS has consistently moved in ways that raise prices and complicate healthcare access for patients, from authorizing (likely unconstitutional) work requirements for Medicaid programs in Arizona, Arkansas, Indiana, Kentucky, Michigan, New Hampshire, Ohio, Utah, and Wisconsin, to changing the way the Modified Adjusted Gross Income (MAGI) – the measurement used to calculate eligibility for assistance programs – is calculated. CMS Administrator, Seema Verma, has consistently ranked high on the Cruella de Vil Scale of Human Empathy, frequently siding against the interests of patients in her administration of federal healthcare programs.

Caught in the middle of this battle between private insurance profits and purported (but undelivered and undeliverable) savings for federal programs is the patient, who has seen their access to medications consistently slip further and further out of grasp. It is time, once again, for Americans to decide which is more important: the value of money or the value of human life. Sadly, I’m not at all confident that we will make the right decision.

References:

• Schweitz, M.C. (2019, January). The Cost-Shift Conundrum of Copay Accumulator Programs. Thorofare, NJ: SLACK Incorporated: Healio: Healio Rheumatology: Practice Management. Retrieved from: https://www.healio.com/rheumatology/practice-management/news/print/healio-rheumatology/%7B04769e45-fca4-4ce6-90be-8f441d6afc7d%7D/the-cost-shift-conundrum-of-copay-accumulator-programs

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.

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.