PC Access and Affordability Archives

The impact of prostate cancer isn’t just physical, it’s also financial. Navigating coverage and out-of-pocket expenses is a minefield for many patients and care partners.

Let us help you make sense of costs, coverage and where to turn to for help.

More resources for Prostate Cancer Access and Affordability from Patient Empowerment Network.

Extended Quick Guide to Medicare

This guide was originally published by our partner, Triage Cancer, here.

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Quick Guide to Health Insurance Options

This guide was originally published by our partner, Triage Cancer, here.

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Financial Resources for Patients and Families

Financial Resources

How Can You Access Personalized Prostate Cancer Treatment? Resource Guide

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Download This Guide

Triage Cancer’s Quick Guide to Health Insurance: Employer-Sponsored & Individual Plans

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Triage Cancer’s Quick Guide to Health Insurance: Medicare

This guide was originally published by our partner, Triage Cancer, here.

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Patient Assistance Programs (PAPs)

Patient Assistance Programs: A Guide for Patients

Cancer is costly. Each year, it costs $180 billion in health care expenses and loss of productivity, says the American Cancer Society. For individuals, it is the life-saving medications they need that can cost the most. According to cancer.gov, 90 percent of Americans say that cancer drugs are too expensive, and the prices have been steadily increasing for the last twenty years. Some cancer drugs debut on the market at a cost of more than $100,000 per patient per year, some for as much as $400,000. With this type of pricing, even insured patients can be facing out-of-pocket expenses in the tens of thousands.

When patients can’t afford their medications, it can lead to people taking them in lower doses or skipping them altogether, and that can lead to serious consequences, such as shortened survival times. High-cost medications can also lead to financial ruin for some patients. Chronic lymphocytic leukemia (CLL) patient James Miller, whose copay for his experimental and life-saving medication is “outrageously expensive” at $790 a month, says that, medications could eventually bankrupt people, especially if the medications are a patient’s only option for survival.

It’s literally a matter of life or death for patients like Miller to find funding solutions for their cancer drugs. Luckily for him, his medication is covered through the manufacturer’s Patient Assistance Program. Drug manufactures created Patient Assistant Programs, commonly known as PAPs, to provide qualifying patients with free or discounted medications.

While just about every manufacturer has an assistance program, one of the first manufacturers to offer a PAP was AstraZeneca. Company representative Colleen Kempf says, AstraZeneca began offering patient assistance over 40 years ago. The program now covers the company’s marketed medicines, and Kempf says, in the past ten years, the company has helped over 4 million patients with access to medications. “Our programs are driven by our corporate value in putting patients first. We believe that we have a role to play to support patients, and since 2005 have expressed this commitment in a very public way through our advertising.” Their PAP slogan, “If you can’t afford your medications, AstraZeneca may be able to help,” might be familiar to many as it is frequently heard at the end of its television adds and leads patients to its website which is where most PAP information can be found.

Find a PAP

The most important thing to know about PAPs is that they are available. They all vary a bit and have different names, but chances are, your drug’s manufacturer has one. AstraZeneca’s is called AZ&ME. Genentech, the manufacturer of the medication Miller takes for his CLL, calls its program Genentech Access. Celgene refers to its as Patient Support, and Takeda refers to its as Help at Hand.

Once you know assistance is available, it’s fairly easy to find it. All it takes is an online search of the name of the drug, coupled with the words “patient assistance program”, and you should be well on your way to the application process.

John Rosenguard, a multiple myeloma patient, learned about PAPs while doing research about insurance carriers. In addition, Celgene, the manufacturer of his medication, led him to its assistance program through an online risk management survey he was required to take when he was prescribed the medication.

NeedyMeds

There are also websites specifically designed to help patients find assistance. Non-profit website needymeds.org was formed in 1997 with the intent of helping patients navigate PAPs.

While it may seem like the best place to learn about PAPs is the internet, patients and drug companies both recommend you include talking to your healthcare provider about options. Miller learned about the Genentech PAP he uses through his doctor who put him in touch with a specialty pharmacy who provided him with a PAP application. Miller says he would not have known about the PAP on his own, but that without it he would “go broke”. He advises other patients to ask their treating physicians about options. “Any doctor prescribing an experimental drug like that will have a relationship with a specialty pharmacy,” he says.

Miller’s advice is good, but most people don’t seem to be following it, according to cancer.gov, which reports that only 27 percent of cancer patients, and less than half of oncologists, say that they have had cost-related discussions. But, nearly 66 percent of the patients say they want to talk to their doctors about costs. They should.

AstraZeneca’s Kempf says the company ensures that healthcare providers, patients, and patient groups are made aware of its AZ&ME assistance program. “As with any type of information or program, providers will have different levels of understanding regarding available PAP programs,” says Kempf. “The AZ&ME program works closely with healthcare provider offices on applications at their request and we’ve also seen some offices support their patients by assisting with the enrollment process for their patients.”

PAP Enrollment

Each company has a different process for enrolling in its PAP. Some applications require extensive financial information, while others require basic information; Some require doctors to fill out a portion of the application, while others only need a signed prescription. Miller says for the Genentech enrollment process, he had to provide his financial information and that the application had two or three pages for his doctor to fill out. Rosenguard says the Celgene application process was extremely simple and that it took about two weeks for him to be accepted into the program.

The best way to know what the enrollment process is for the manufacturer of your medication is to go to the company website. The websites are easy and straightforward for patients to navigate. For example, the Celgene Patient Support site has large buttons that say “Enroll now” and “Financial Help”. The words are in big, bold type, and each step is written in clear language. The site also provides a phone number, email, and fax information. There is an option to download the application form if you prefer to print it and fill it out by hand. The steps you will take are listed clearly, and what you need to include with the application is listed clearly. The process was easy and efficient, says Rosenguard.

 

Most applicants shouldn’t require any assistance beyond what the manufacturers can provide on their websites or by phone, but there are some businesses who will help patients complete the enrollment process for a fee. The prices vary, as does the quality of service.

PAP Qualification

Not all patients will qualify for assistance. While each program has its own qualifying criteria, and there may be different requirements for different medications produced by the same manufacturer, in general, to qualify for a PAP, a patient must:

  • Have very limited or no drug coverage from public or private sources
  • Must demonstrate a financial need based on a set income and assets
  • Provide proof of US residence or citizenship.

“The AZ&ME program is intended to serve patients most in need and has income eligibility criteria that speak to this design,” says Kempf. “The program primarily serves patients that have no insurance coverage or patients that face affordability challenges with their Medicare cost-sharing requirements.”

In addition, the amount of assistance a patient receives and the length of time each patient can stay on the program varies. AZ&ME patients without insurance are required to reenroll in the program annually, and Medicare patients are required to reenroll at the start of each calendar year.

“It is important for patients to understand the eligibility requirements as well as the documentation requirements that are typically associated with applications,” says Kempf. “Ensuring that the application is filled out, complete, and submitted with the required documents, helps ensure an easy enrollment process.”

PAP Basics

Once accepted into the program, both Miller and Rosenguard say that there is not much of a time commitment from them. They both receive their medication through a specialty pharmacy. Miller says his is delivered to his door each month, and Rosenguard says he is able to refill his prescription online, and also has a monthly follow up phone call with the pharmacy. In addition, Rosenguard is required to follow risk management guidelines to participate in the Celgene PAP. Guidelines, as specified by Celgene include, following safe sex practices, not donating blood, and monitoring cuts with blood loss.

AstraZeneca also uses a central pharmacy to dispense its medications to patients, says Kempf. “All medications are dispensed by a pharmacy and are sent directly to the patient’s home unless it is a medication that requires in-office administration by the physician. In office administration products are sent directly to the healthcare practitioner,” she says.

Are PAPs Worth It?

For patients struggling to pay for their medications PAPs may be the only option, and the pharmaceutical companies seem committed to providing the service. Kempf says that at AstraZeneca, they are always evaluating patient feedback to see how they can better serve patients, including streamlining the application process.

Rosenguard recommends the PAP programs. He says, co-pays, like his that were $200 a month per medication, can add up quickly. “The benefits were noticeable and met my needs to control costs over the long term,” says Rosenguard. “Plus, it educated me to help others (employees, support group members, friends) who might need this information in the future.”

How to Pay for Long-term Care on a Fixed Budget

Long-term care costs are rising yearly, and with more people approaching age 65+ than ever before, the rates are not expected to fall. Not everyone plans ahead and unfortunately, we cannot know for certain when someone will begin to need long-term care, as it varies case by case. For the elderly population specifically, many individuals begin long-term care after a sudden life change that renders them incapable of caring for themselves, like a stroke or a fall. In the best-case scenario for a stroke or a fall, patients return home after successful rehabilitation. However, as unfortunate as it may be, many individuals are unable to return to their former health.

Sometimes, there is no sudden change and it is simply advanced age that is the main factor determining whether or not a person can safely remain independent. When someone does begin to need long-term care, depending upon the severity of the person’s situation, they are either taken care of by professional caregivers, family members, or moved into an institutional setting. Statistically speaking, about 80% of elderly people who need long-term care receive services within their own home or the home of a family member. The remaining 20% move into facilities, specially designed to accommodate a wide range of needs. Regardless of where we choose to spend our twilight years, there are costs involved. Below, I’ll outline some common ways people are able to fund their long-term care.

What Exactly is Long-term Care?

Long-term care simply refers to the type of assistance provided to people with cognitive or functional limitations to help them perform daily activities. If patients are unable to return safely home after a hospital stay, facilities continue rehabilitation to try and strengthen patients and improve their quality of life. The more a resident can do by himself or herself (eating, using the bathroom, bathing, and changing), the happier they generally are.

According to the Medicare Current Beneficiary Survey, the elderly population in nursing homes has declined over the past ten years. Through more advanced rehabilitation practices and increased availability to services, the majority of long-term care recipients are able to live with loved ones, in assisted living, or group homes if they do not need the intensive 24hour supervision that comes along with nursing home residence. Nevertheless, the question still remains: how to pay for the care you need.

Medicaid Long-term Care:

For many people, Medicaid is the best option when it comes time to pay for long-term care. If your loved one meets certain medical and financial requirements, or they are already receiving SSI benefits, they may be eligible. For most states, the monthly income limit is around $2,200 and the asset limit is $2,000. For Arizona specifically, the monthly income limit is $2,205. Anything beyond these values needs to be spent towards care or the applicant may be ineligible. The medical eligibility is stringent and the recipient can only live in Medicaid-approved homes or receive Medicaid-approved services in the community. Even with all of the requirements, this is still the best option for many families. For up-to-date Medicaid information, follow this link.

Long-term Care Insurance:

Although a person may have paid for medical insurance their whole life, medical insurance companies do not cover long-term care. There is, however, such a thing as long-term care insurance. There are different policies with different features, but generally, a person pays a monthly premium and when long-term care services are needed, the policy will pay out a certain amount, usually in the hundreds of thousands. Similar to life insurance, premiums are cheaper if the person buying insurance is young and healthy. Those already in need of long-term care services are not able to get coverage. Although these policies do not last forever, the payout is usually sufficient for the entire cost of care.

Sometimes, however, the care outlasts the insurance coverage. Don’t worry because many states have what is called a long-term care insurance partnership, useful when people spend through their policy and need to apply for Medicaid coverage. The partnership is a program between the state and private insurance companies. Partnership policies protect assets by reciprocating dollar for dollar what policyholders pay into their policies. For example, if you bought a Partnership Policy with a maximum benefit payout of $200,000, you are able to protect $200,000 of your assets. For married couples each spouse needs to purchase their own policy.

Once the original long-term care insurance coverage is exhausted, you may apply for Medicaid with the benefit pay out’s worth of assets exempted. This is extremely beneficial because again, most states have an asset limit of $2,000. In addition to the asset limit, Medicaid penalizes people who have given away or sold property below fair market value within the five years preceding the need for long-term care assistance.

Qualified Income Trust:

If an individual is over the financial limit for Medicaid long-term care coverage, some states allow applicants to spend down income towards medical care while others allow the creation of Qualified Income Trusts, also known as Miller Trusts. Miller Trusts place any income beyond the state’s limit into a trust, designating the state Medicaid program as the beneficiary once the long-term care recipient dies. The problem many people have with spend-down and Qualified Income Trusts is that for the most part, all assets and income eventually go towards care. Long-term care insurance, as described above, helps prevent the complete drain of assets for people who are hoping to leave behind a legacy.

Reverse Mortgage:

Another option that has gained popularity in recent years is the reverse mortgage. A reverse mortgage is not complicated, but may not be the best option for every situation. Essentially, a reverse mortgage is a loan borrowed against the equity of a home, but rather than making monthly payments, the bank reversely pays the borrower. As long as the borrower remains in the home they do not have to pay the bank.

If the borrower moves to a care facility or passes away, then the bank claims the property to pay off the amount given in the loan. This is a good option if the homeowner is healthy enough to remain at home, but requires some caregiving services. Also, this is for people who are not interested in leaving their home behind to loved ones. See here for a more detailed explanation of pros and cons.

Even with 80% of elders receiving “free” care through informal caretakers such as family members, the Congressional Budget Office estimates the value of this donated care at approximately $234 billion for 2011, the last year calculated.[1] This number is determined based on calculating forgone wages, time that could be spent employed elsewhere, transportation costs, and performing duties otherwise performed by paid healthcare aids.

For family caregivers it is especially important to reach out to a social worker for benefits you may not be aware of in your home state. If you are a family caretaker, your loved one may be eligible for respite care, a paid-for medical alert, home health services, or community based waivers paid for by Medicaid depending on financial and medical eligibility. Don’t wait until it is too late and start planning today.


[1] See page 2. http://www.cbo.gov/sites/default/files/44363-LTC.pdf