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.
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. Now a partner with Patient Empowerment Network (PEN), the vast NeedyMeds database of PAPs can be searched using the link below. All you have to do is enter the drug name to discover whether or not a PAP is available.
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.”
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.
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.”
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.”
I know, it’s so scary. Making a plan to cure yourself and save your life. Literally, you have the weight of your world in your hands. But not to fear. Even though there is still no “cure” for cancer, many have successfully healed themselves from the deadly disease. Be assured there have been many countless cancer survivors before you who have paved the road to recovery with hope and encouragement. We’re just here to guide you on your way.
Being diagnosed with cancer is terrifying. So finding assistance and helpful information should be easy. In this blog entry, I will be guiding you through how to create the best appropriate cancer plan for your body and your condition. Within a cancer plan are three distinct segments – a treatment plan, a payment plan and a recovery plan. A treatment plan considers all of the patient’s therapy options, including conventional care and alternative methods, to make the best informed decision per condition. A payment plan accounts for the finances and how to outsource funds to pay the inevitably heft medical bills. And lastly, a recovery plan includes the supplementary actions that need to be taken, such as changing your diet and lifestyle goals. When all three parts function together, it is intrinsic to improving the chances of survival. Effectively enforcing and efficiently keeping track of a cancer plan will help a patient progress through healing swiftly and with a greater peace of mind.
To begin, you should assume it’s your responsibility to know everything about your body and your condition. But isn’t this my doctor’s job? You may ask. Well, sadly, most doctors won’t be able to provide personal quality care because of the largely disproportionate ratio of registered oncologist to new patients. With approximately 1.6 new cancer cases each year and only 21,200 registered oncologists, there’s a dire shortage of cancer specialists in our country (American Cancer Society, 2014). It’s best if you don’t become solely reliant on your doctor. He/She should really only be there to clarify esoteric information for you. Bring out the doctor in yourself by having a cancer planner to keep all of the information pertaining to your cancer organized & easily accessible. Be prepared for every appointment by doing your own research and coming up with questions beforehand. Make the most out of the time you have with your oncologist because it may be hard to get in touch with them during off hours. Take notes of every appointment so you can keep track of how you’re progressing after each. Accumulating all the data you can possibly find will only benefit you as a patient and caregiver. All you have to do is seek and you will find the answers. And the more you know, the more you have to fight with.
The first thing to consider after your initial diagnosis is – What are the treatment options for my type of cancer? If your cancer is invasive, your doctor will strongly urge you to perform a very aggressive form of orthodox treatment as soon as possible. Be ready to be convinced to do surgery, radiation or chemotherapy. But just know that there are many alternatives on the spectrum of treatments. From surgery, chemotherapy, immunotherapy, gene targeted therapies and clinical trials, to some of the more obscure treatments such as plant extract therapies, there are just so many options available. It’s also common to integrate therapies of the conventional norm and of the alternative. For example, a patient with stage 2 lung cancer may opt to have surgery and also adopt Gerson Therapy as a supplemental treatment where they heavily regulate their diet. So how do you choose the best route? This is where the beauty of having a cancer plan comes in. Start by weighing out your different options in terms of cost, duration, side effects, convenience and the general pros and cons for each. This will help you to filter out the options that aren’t plausible for you and your family. Trust your gut feeling and narrow your list down to the top three options. Create a visual roadmap for each treatment option listing the action steps you’ll need to take in order to see this through and picture yourself after each milestone. How are you mentally, physically, emotionally and financially? Trust me when I say that you’ll have a greater peace of mind knowing that you’ve weighed out all of your options and have narrowed your focus down to the treatment plans you believe will work best for you. Trusting your treatment plan is absolutely vital to fighting your disease. Believe you can and you’re half way there.
Now how do you pay for all of this? There are ways to pay for all of your expenses when you get creative with it. Since crowdfunding has taken off in the last couple years, you’ll be surprised at how many people, whether it’s your friends or those who’ve just heard your story but have never met you, are more than willing to help your cause. You can check out platforms like GiveForward, GoFundMe or Indiegogo. For further financial assistance and direction, you can evaluate these helpful organizations from our resources list (www.familyreach.org, cancercarecopay.org, cancerfac.org, thechainfund.org). Having a cancer planner will help you to keep track of all your medical expenses in one place and stay on top of your payments. The last thing you want to worry about is all your expenses adding up and getting out of hand.
Finally as part of your recovery plan, it’s important to ask yourself what vital changes to your lifestyle choices are necessary to help you heal and strength your immune system. A breakdown of the immune system is the primary reason humans develop cancer; we must work towards recovery by building back up the immune system with nourishing therapies. There’s a bunch of research you can do on cancer fighting foods you should incorporate into your diet. There is a cancer fighting food pyramid inside of CanPlan to help you get started. What you put into your body is one of the only elements you can control in your fight against cancer, so don’t ignore the importance of it. Now to create the best plan of action to guide you towards recovery, start by keeping track of your daily diet, exercise and medications. Then at the end of the day, rate how you feel overall on a scale of one to ten and what your general mood was for that day. Do this everyday as you start to make your lifestyle changes and notice what elements are and aren’t working for you. Perhaps you noticed that running for 30 mins greatly improved how you felt for that day. Take note of this and be consistent with it in your treatment plan. The more aware you become of your body and how it reacts to certain elements, the better you’ll be able to detect any new symptoms and find ways to combat against it. Keeping track of your progress will help put you in the driver’s seat with your fight against cancer. Don’t wait around for your doctor to tell you how you’re doing. This is your fight. You control how you want it to go.
Remember, you know your body best so always honor your body and how it reacts to certain treatments. A one-size-fits-all approach, much like the plan your doctor will prescribe you, won’t work in this situation. Since there is no “cure” to cancer as of right now, you’ll have to discover the best recovery plan through experimental trial and error. We encourage you to ask for help and seek guidance as much as you can. We’re lucky enough to live in an era, and country, with unlimited access to infinite knowledge where we can freely acquire information to make a well-informed decision (just be sure to double check your sources). It’s as if we’re given all the tools we’d need to be our own doctor. Now isn’t that a progressive thought.
Meet the Author : Sharon Kim
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Editor’s Note: This blog was written by Winn Sams, D.C. Dr. Sams practices in Columbus, NC a small town snuggled in the foothills of the western part of the state. A native of Charlotte, NC with a B.A. in Economics from the University of North Carolina- Chapel Hill, Dr. Sams graduated from Sherman College of Chiropractic in 2002 summa cum laude and valedictorian of her class. From her own experience where personal health directives and choices were not heard nor respected, she decided to create a site where uniqueness and diversity could be anchored in healthcare. Being a healthcare provider, she knew how important it is for the “whole” person to be not only known, but included in a plan of care. Thus, Least Invasive First was born.
Recently, my youngest daughter broke her right arm and dislocated her elbow. The ER referred her out to an orthopedist nearby. We showed up at the appointment with a lot of questions and wanting to know what our options were. The doctor entered the room, did not make eye contact with me nor my daughter’s friend, who was sitting next to me. His handshake was a mere extension of his hand to us (friend and myself), kind of like a king might do to his subjects to kiss his ring. He said he would like to order a CT scan of my daughter’s elbow and do surgery. I asked were there any other options and he said “No” and that he would be back in a few minutes. He never came back, but his nurse showed up to schedule the surgery. I was furious and let her know my dissatisfaction, clearly acknowledging that it wasn’t her fault, but we would not be coming back.
Now, you have to understand I am a Doctor of Chiropractic. I see patients every day and I would never treat anyone the way we were treated. There was no informed consent , no shared decision making in developing a treatment and no respect for who my daughter was (or us for that matter) as a unique person seeking care. EVERYONE deserves all of the above! So, we left that office and made an appointment with another Orthopedist, who was absolutely fabulous. Our experience was night and day from the first one. We felt like we were a part of creating our plan of care, throughout the whole appointment and were at peace with the planned surgery, leaving there feeling like we were in good hands.
My concern is this. When we are in pain or an emergency situation, we usually are not thinking straight. We just want someone to help us get out of pain and/or tell us what is wrong. We may accept the first Doctor that we encounter, as he/she knows more than us. As far as what a Doctor is taught in school, the knowledge of how the body works and their expertise/experience, that is true. HOWEVER, the patient still has to be included in the whole process, otherwise, you are giving your power over to someone to do as they deem fit TO you. That is a recipe for disaster.
Data and evidence based science measure outcomes that can be repeated. That is a big help when trying to choose a plan of action, but healing and how our bodies RESPOND to said procedures or medications is not an exact science. This is where our uniqueness comes in. Some people are allergic to medications or do not need to start out with the highest dose, as their bodies may actually react unfavorably to what may be the standard practice. Some people would like to try other options first, if possible. In the best interest of all, seeing how that choice works and then moving on to more invasive choices if necessary. It is imperative that your Doctor know as much about ALL of you to make the best plan of care. But, you don’t have to back down or be ashamed of your choices if they don’t match up with your provider’s. Remember, a Doctor is only a person ( yes, just a person like you and I) who has certain training and experience in particular fields. You cannot assume that your Doctor has your best care in mind, when they don’t have a clear picture of who you are on all fronts.
So, with all of this in mind, I developed a site called Least Invasive First, www.leastinvasivefirst.org, where you can keep all of your advance health directives and info in one place, with everything digitally accessible at any time. You can upload forms and/or pictures into your profile that provide information, that in especially stressful times, you have available at the click of a button. Medications can be listed with dosage, so you can edit them as they change. You can also give your username and password information to a family member, so they have access to your information if you are unresponsive or not able to make decisions for yourself. There are a lot of creative ways that this service can be used.
Fortunately, this concept works well for the Doctor and/or hospital side too. I have interviewed many of both and all have voiced a resounding affirmation that information the patient provides would be a tremendous help. I am glad to offer a way to potentially change healthcare and it starts with you!