Better Together: A Collaborative Model to Address Health Equity

By: Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation

Since our inception 25 years ago, Patient Advocate Foundation (PAF) has been the voice for the voiceless, navigating the complex healthcare and insurance coverage systems to enable patients to gain access to life changing treatments. We have helped more than 1.7 million people access, and as importantly, afford the care needed to sustain life and, in many cases, improve quality of life. Our firsthand experience helping patients and their families remove the barriers keeping them from appropriate care or causing financial and practical hardships in their homes has been humbling and insightful. As an organization, we have witnessed firsthand the disproportionate long-term consequences of unaddressed social determinants of health and the social needs gaps caused by them. It is through this realization that PAF established longstanding commitment to develop programs based in demonstrated patient need and intentionally bring our programs and services to these communities in an effort to refortify the financial and social needs foundation on which many families found was crumbling beneath them. Patient Advocate Foundation’s focus on health equity is intentionally designed to address the intersectionality of health and the social, financial, and logistical challenges that impact one’s ability to access healthcare and adhere to treatment recommendations. In some communities across the country, left unaddressed, the impact of this intersectionality manifests in late-stage diagnosis, decreased quality of life and/or premature mortality.

PAF has had a long-standing goal of reaching all communities, not just those who are fortunate enough to have an education, employment, insurance, access to a healthcare system or supported by a system of family and friends who advocate for them. We have sought and continue to establish pipelines from limited resourced communities to the platform of free services and resources available through PAF, developing many programs over the years that have enabled us to bring services, education, and support to underserved communities, often partnering with community and national organizations to amplify impact.  

We want to further expand our reach into the communities that continue to experience healthcare inequities. Our goal is to expand the degree to which PAF programs and services effectively reach and serve diverse patients in a way that facilitates their opportunity to attain the highest level of health, produces data and patient stories that enable advocacy and policy activities to address social needs gaps. We realize that our work to solve insurance issues, access issues, and affordability of patient treatments across all disease areas represents only some of the needs patients and their families have. 

One of the programs currently providing services is our HIV, AIDS and Prevention CareLine which provides individualized, sustained assistance to patients diagnosed with HIV, AIDS or are currently being treated with a medication to prevent HIV infection. The CareLine Case Managers provide help to patients across the country to resolve health care access and insurance issues at no charge to the patient. The HIV, AIDS and Prevention CareLine can be accessed by phone at 844-737-6674 M-F from 8:30 a.m. to 5:00 p.m. EST or at hivoraids.careline.org

Through the PAF Co-Pay Relief (CPR) program, insured patients can apply for direct financial assistance to cover treatment related expenses connected to their HIV/AIDS treatment and may include insurance co-payments, co-insurance and deductibles, office visits and administration charges related to treatment and medical insurance premiums. CPR is available for any insurance type including Medicare and Medicaid. Patients are approved for a 12-month period and can reapply in future years in co-pay assistance is still necessary. CPR can be accessed by phone at 866-512-3861 and CPR fund details and application documents can be found at copays.org/diseases. 

Patient Partner for Equity

Despite reaching hundreds of thousands of people who are part of an underserved community, providing critical navigation and financial support to them that facilitated access to care and resolved daunting practical needs, we also know that there is still much work to do. Through our experience breaking down barriers to care and our understanding of the impact social determinants of health have on healthcare access and health outcomes; it is has become clear to us that the path to equity and access is through interconnectedness. Working together to connect these high-need patients who are often not connected to health and social services, with the resources they need to address medical and social needs is critical.  

The Patient Partners for Equity collaborative creates a one-to-one relationship between PAF and other nonprofit organizations for the purposes of connecting patients, specifically those from communities that are underserved and routinely experience health inequities, to PAF’s direct service programs and educational opportunities. This includes our case management navigation services, patient educational materials, our financial aid funds, and our Co-Pay Relief program. This bidirectional relationship allows organizations, and ours, the opportunity to close the gap of health inequities for some patients by connecting them to PAF case management, our financial assistance programs, and educational services, further enhancing the resources that your organization provides. Our intent is to provide organizations with the education and tools necessary to connect patients, families and caregivers to our patient support programs when appropriate, leveraging our services to amplify what you are able to do for those seeking your support. We believe that the path to achieving health equity is reliant upon the collective strengths that this type of partnership will afford. We need your help, and so do patients, their families, and caregivers. We have designed this collaborative with this as the motivating force.

Ready to be a Patient Partner for Equity?

Participation is simple. We ask for your commitment to participate through the completion of the Patient Partner for Equity profile form, allow us an opportunity to provide training to your team(s) about our patient support programs and agree to be included as a Patient Partners in Equity member on PAF’s websites. We have also created other touchpoints and opportunities to engage as you deem appropriate or possible for you and your organization.  

As a member of PAF’s Patient Partners for Equity program, your organization will receive the following benefits:

• Recognition of your organization as a Patient Partner in Equity on PAF’s websites including your logo, an organizational profile, and reciprocal links between our website and yours.
• Personalized education about PAF’s patient support and educational services delivered to your team(s) virtually in a live and recorded format.
• Regular partnership e-communications including the PAF Spotlight, NPAF Policy Dispatch Newsletter and other patient focused patient resources, public policy updates and events.
• Complimentary virtual membership for your organization to National Patient Advocate Foundation’s (NPAF) Policy Consortium. 
• Spotlight of your organization on PAF’s websites once per year
• Access to PAF’s Patient Partner Portal (Available 2022), a dedicated portal for nonprofit organizations to access PAF’s patient programs and educational resources in a centralized location.  This includes access to the PAF Case Management secure referral form, Financial Aid Fund application portals.  In addition, the portal will enable your organization to apply to our Co-Pay Relief Program (CPR) for financial assistance on behalf of patients who meet eligibility requirements, track activity of patient grants, assist with reapplications or submission of materials as needed and gather insights on how these grants impacted the lives of patients seeking your support.

As a member of PAF’s Patient Partners for Equity program, we request that you provide the following:

• A link to PAF’s websites, where appropriate (partner page, patient resource page or other content area)
• Allow PAF to provide training about PAF’s patient support programs annually to your staff working with patients, families, and caregivers 
• Participation in an annual survey or meeting to gain feedback on the program
• Provide a single point of contact for general partnership touchpoints

We appreciate your consideration of our invitation to participate in the Patient Partners in Equity program.  If you would like to be part of the Patient Partners for Equity collaborative, or if you would like to learn more, please contact Alan Richardson, EVP of Strategic Patient Solutions at alan.richardson@patientadvocate.org or 757-952-1372.

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.

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. 

WATCH VIDEO

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.

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

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

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

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

To best address the cost concerns of our patients, Patient Advocate Foundation (PAF) conducted two online survey assessments of patients to identify root causes of financial toxicity including preferences towards cost conversations, degree and sources of financial stress.

Across all demographic groups, HIV respondents report that healthcare costs created a financial burden, including:

• Fifty-eight percent indicated experiencing a financial hardship in the previous 12-months due to medical care, with 16% indicating they owed more than $5,000. 
• Oral medication (73%), office visits (40%) and laboratory tests (24%) were the main cost concerns. 
• Insurance related costs (76%) led to the most financial strain. 
• To address financial stress respondent’s:
• Reduced critical expenses (39%)
• Borrowed money from family/friends (34%)
• Paid utility bills late (23%) 
• Were unable to purchase groceries (20%)

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

Healthcare systems should consider ways to routinely initiate cost of care conversations with all individuals, to address patients’ reported desire for conversation and their need for greater healthcare related cost information. Take the following:

• Less than half (48%) of HIV patients had conversations with medical providers about care costs even though almost 80% indicated that these conversations were very important. 
• Respondents utilized their health plan (63%) or advocacy groups (27%) as alternative sources of cost information. 
• Almost 70% indicated that knowing out-of-pocket costs were extremely important when making care decisions and 41% wanted to have these conversations with their medical provider.

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

PAF is a non-profit organization which provides case management services and financial aid to patients across America with chronic, life-threatening, or debilitating illnesses including HIV and access to HIV Prevention (PrEP). If you have questions or concerns around accessing or covering the costs of your medication, you can reach one of our case managers through our HIV, AIDS and Prevention CareLine (link below). Services are free of charge to the patient and can be provided in both English and Spanish.

• https://hivoraids.pafcareline.org/

Our website also hosts several useful tools that can be used by patients seeking information on access to HIV or prevention medication and facilitating cost of care conversations with their medical provider:

• https://www.patientadvocate.org/explore-our-resources/common-barriers-affordability/
• https://www.patientadvocate.org/explore-our-resources/interacting-with-physician/
• https://www.copays.org/diseases/hiv-aids-and-prevention

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.

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.

Communication is key in creating an environment for shared decision-making

By: Kathleen D. Gallagher, MPH, Patient Advocate Foundation, and Rebecca Kirch, JD, National Patient Advocate Foundation

Patients and families confronting chronic, debilitating or life-threatening conditions at any age and any disease stage require reliable and affordable access to high quality therapies and supportive services throughout the care continuum in the settings that are best for them to optimize their outcomes and experiences. Yet today’s disease-centric care is fragmented across multiple specialists, subspecialists and settings, creating pressures to navigate pathways-driven treatments that overlook quality of life, functional outcomes, other personal priorities or individual characteristics that matter a great deal to patients and their families.

We know that patients rarely experience their symptoms as one isolated problem and can benefit from care that is truly person-centered and involves shared decision making. To accomplish this person-centered health care transformation, knowing precisely what is important to patients and families is paramount. Progress also requires dedicated commitment to enhancing clinical communication that is person-centered and goal-directed – learned skills that are essential drivers for delivering value-based care.

Photo Source: paintalks.com

Better health care value begins with improved communication about goals of care and personal values. Patients and families consistently report that they want to be involved in understanding their disease prognosis and treatment options and making decisions about their care. We chose to address these concerns as part of a grant funded project through targeted online survey efforts. Our primary goal was to examine multiple thematic areas from a broad patient perspective designed to explore the dimensions of what matters to patients.

The following highlights the preliminary analysis of some of the data collected from our virology cohort (HIV+ patients), specifically around the theme of communication. Survey participants were asked a series of 5 questions to gather information on how they wanted to receive health information, how involved they wanted to be in making healthcare related decisions, discussing what matters to them when selecting a treatment option, and their comfort level in broaching the conversation about quality of life with their doctor.

When asked, “how do you like to approach making decisions about your treatment” over 65% of the respondents wanted to make decisions in partnership with their medical versus the 14% who wanted to make their decisions alone or the 5% wanted the physician to make the choice for them. An additional 14% wanted their doctor to explain all of the options to them in detail before working together to make a treatment choice. The message from this data point is clear and supports our hypothesis that patients want dialog and information from their medical team and they want to be partners in making treatment choices.

In regards to doctor initiated conversations about things that are important to the patient in their care (non-clinical outcomes) 60% of respondents stated that their doctor did ask them about “what is important to you as part of making plans for your treatment”. Although this data point is encouraging, what was most compelling was that over 95% of those who answered in the affirmative, followed this question with a positive response to the question “did you feel that your doctor took that information into account when making recommendations”. So not only were the able to have the conversation – but their input was valued and used to identify and select a treatment option that was of value to them.

While only a small selection of the 100+ questions asked in the Patient Value Survey, the preliminary data gathered around patient-provider conversation in regards to treatment and care is encouraging. Historically, the HIV population have been the groundbreakers and drivers of action and having a voice in the way their chronic condition is treated. As we continue to use the collected data to drive a better understanding of what matters to patients, and how best to equip them for conversations about their comprehensive care and planning treatments that provide them the quality of life that they are seeking, we will continue to reach out to our non-profit partners to ensure that all voices are being heard.

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. 

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.