AML Access and Affordability Archives

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

More resources for AML Access and Affordability.

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway?

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway? from Patient Empowerment Network on Vimeo.

What steps are being taken to help underrepresented acute myeloid leukemia (AML) clinical trial groups? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses an important approach that is being utilized to dismantle AML clinical trial barriers for underrepresented groups and proactive patient advice to work toward clinical trial engagement for all patient groups.

[ACT]IVATION TIP

“…patients of really any group to say kind of to their physicians, ‘How are people like me being engaged in research, and is there anything that I can do to help the groups that I identify with be more engaged in the research that is taking place, so we can really move the field forward and make sure that cures are happening for everybody?’”

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Related Resources:

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

Transcript: 

Lisa Hatfield:

Dr. Hantel, for patients who belong to a racial or ethnic group that are underrepresented in clinical trials, what steps are being taken to address this issue among you and your colleagues?

Dr. Andrew Hantel:

That’s a great question. So there are a number of efforts being made in our community to increase diversity in AML clinical trial enrollment, and I really think we are taking on what’s called a multi-level approach, meaning that we need to target things at different levels, the level of the patient, the level of the doctor and the research team, the level of how trials are designed to the level of the hospital,  level of the community, and then the level of the government or the regulatory people, and just working on one of those levels is really going to fix things and so we are starting to kind of chip away at the problems that exist at each of those levels, that are really stopping underrepresented groups from being represented in clinical trials.

A few examples of these are things like community engaged trial development, where we are linking clinical trial investigators to community members to collectively design trials that really lower some barriers to entry, like eligibility criteria, and then to look at where they’re actually planning on opening up their trials to make sure that they are in communities who have been historically underrepresented, we’ve also set up some monitoring systems since…You may be surprised where they actually haven’t been good systems for telling hospitals, telling researchers, telling doctors, who am I enrolling versus who am I actually seeing as a patient and who’s being seen at our hospital versus who lives in the community that the hospital serves. 

Really without that basic information, doctors and researchers can’t really have an idea in any real-time sense of how well or how poorly they’re doing at enrolling equitably. And we’re trying to do the best for our patients. And a lot of this is kind of inadvertent exclusion, but I think unless you present those data to people, they are likely going to assume it’s going well or that the problem kind of exists elsewhere, and they can’t do any better. And so I think linking that down to the program and the hospital actually gives them buy-in as to, “Oh, this is something that I’m doing, this is by a responsibility.”

There are also programs that we’re working on to train culturally diverse research staff and physicians, since a lot of research teams don’t look too much like their patient communities. And finally, we are creating educational programs with patient advocates and community organizations to educate patients about AML and about trials to make sure that they’re well-informed, have a place to go for answers, and all of this together really leads to lowering barriers, expanding access and making the system more inclusive and reflective of the community.

So my activation tip for this would be for patients of really any group to say kind of to their physicians, “How are people like me being engaged in research, and is there anything that I can do to help the groups that I identify with be more engaged in the research that is taking place, so we can really move the field forward and make sure that cures are happening for everybody.

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Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation? from Patient Empowerment Network on Vimeo.

For acute myeloid leukemia (AML) clinical trial participation, what makes post-access enrollment essential? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses factors that play into post-access enrollment and patient advice to help decide about clinical trial participation.

[ACT]IVATION TIP

“…when you’re asking about clinical trials, really ask not only what the trial is about, which is very important in deciding if whether or not it’s appropriate for you, but ask everything about the logistics and ask everything about what it would mean for you as a patient…by looking at it as, who am I as a person, and does this fit with me and sit with also how I want to give back to other people who have leukemia. That’s kind of one way that we help people think about whether or not they want to participate.”

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Related Resources:

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Transcript: 

Lisa Hatfield:

Dr. Hantel, what does post-access enrollment mean, and why is it important in understanding disparities in AML clinical trial participation?

Dr. Andrew Hantel:

Sure, so we have a lot of steps between somebody getting diagnosed with AML and somebody enrolling on a clinical trial, and the first step is actually being at a site where clinical trials are offered. And in a lot of cancers, that is kind of the major barrier to getting on trials and that a lot of people are taken care of at clinics or in hospitals where there just aren’t clinical trials available for their cancer at all. And so after that, we kind of have this idea of a lot of other steps that are needed, even when the person is at a site with clinical trials.

And that’s kind of that whole idea of what post-access enrollment refers to,  that in a very granular way, means and at a site that has clinical trials, does that site now have clinical trials that are right for my specific type of AML, and then after that, am I actually eligible for that particular trial, and after that, do I want to participate, and after that, is it feasible for me to participate?

Because there are a number of other factors that come into a clinical trial, like maybe extra visits, maybe extra tests, a lot of other things that come into trial participation beyond just what the actual trial is studying, and so all of those things together mean post-access enrollment, and there are concerns for acute leukemia with respect to post-access enrollment, because it seems like those kind of bevy of steps are where patients who are historically underserved and from minoritized backgrounds are being excluded more from clinical trials or at least not allowed to participate as much, and we don’t know yet if there is one particular step, but it seems like from all the evidence that we have, that it’s kind of a combination of slightly more difficult steps at each point in that process that make it so in the end, those groups are less likely to enroll and less likely to participate. 

In the past, there was a lot of, I would say almost blame put on some of those groups because it was thought that they were more distrustful of the medical establishment, and I think for right reasons, at least in the past, the medical establishment has done horrible things to minoritized groups in this country. But we’ve recognized that it’s more a lot of structurally racist barriers that are put up in front of those people, and that the good evidence now is that people, no matter their background, really want to participate in clinical trials to the same degree.

And that it’s more kind of the structure is that we, the walls that we put up in front of them, or other things that are stopping them from enrolling, could be insurance, it could be access, it could be eligibility criteria, it could be kind of all of those other burdens that are required, like having a caregiver and everything else, but together, everything after access seems to be just as important for getting people onto a clinical trials in AML, whereas that’s not as much the case in some other diseases.

Lisa Hatfield:

Okay, thank you. And do you have an activation tip for that question, Dr. Hantel?

Dr. Andrew Hantel:

My activation tip for this question would be, when you’re asking about clinical trials, really ask not only what the trial is about, which is very important in deciding if whether or not it’s appropriate for you, but ask everything about the logistics and ask everything about what it would mean for you as a patient. There are some trials that are doing wonderfully about this and really trying to make sure that people are able to continue to live their lives while enrolling and participating in clinical trials.

And so I think by looking at it as, who am I as a person, and does this fit with me and fit with also how I want to give back to other people who have leukemia. That’s kind of one way that we help people think about whether or not they want to participate.

Lisa Hatfield:

Okay, thank you. And everything you talked about, it sounds like clinical trials are so complicated. If patients can have an advocate with them most of the time when they’re going to these appointments, it might be super helpful too, to take somebody with you. There’s a lot of information being throughout it patients, especially when it comes to clinical trial information, so thank you.

Dr. Andrew Hantel:

I completely agree.

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How Can We Address Disparities in AML Among Diverse Populations?

How Can We Address Disparities in AML Among Diverse Populations? from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) patients need to know about care disparities? Dr. Catherine Lai from Penn Medicine discusses ethnic disparities and other factors. Learn about factors in AML care disparities and some available resources for patients to elevate their care.

[ACT]IVATION TIP from Dr. Lai: “Speak with your social worker, is there a resource that I can tap into that can help me with my care so that I can make sure that I can get the best access?”

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Related Resources:

BIPOC Patients Living With AML _ Mortality Rate and Favorable Genetics

BIPOC Patients Living With AML | Mortality Rate and Favorable Genetics

What Different AML Subtypes Are More Prevalent in Certain Demographics

What Different AML Subtypes Are More Prevalent in Certain Demographics?

Transcript: 

Art:

Dr. Lai, how can we address disparities in AML among diverse populations?

Dr. Catherine Lai:

So this is an extremely important topic. And there was a large study that was recently published out of Chicago that looked at the different hospitals in the area and to look at ethnic disparities between white and Black populations and did find significant differences. Unfortunately, I would say that there are many factors that go into this, and a large portion of it is education and resources, and so what I would say is that we…we need to, as physicians and also the community, be better about educating our patients and being able to have access to resources so that everybody can get the same treatment.

And so involving other societies who support cancer to just get the word out that we need to…that we need to be aware of the differences so that we can address them specifically and make sure that for patients who don’t have resources that we are able to provide for them. So the activation tip here is that asking about resources, but we use a lot of Leukemia & Lymphoma Society grants that help our patients get access to and lower the cost of drugs, but also will…they will also provide grants just to help with cost of living, occasionally, there are other societies that can help with ride shares, and so I think even if you don’t know the specific…the specific society that can help, just asking to speak with your social worker, is there a resource that I can tap into that can help her help me with my care so that I can make sure that I can get the best access?

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Extended Quick Guide to Medicare

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

2021-Health-Insurance-Medicare-Quick-Guide

Quick Guide to Health Insurance Options

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

2021-Health-Insurance-Options-Quick-Guide

Financial Resources for Patients and Families

Financial Resources

Resource: AA•MDS Find Your Specialist

AA•MDS has launched a map of specialists who are seeing new patients for treatment or consultation.

It’s important for patients to seek consultation with physicians who have experience working with bone marrow failure disease. They have developed an interactive map of physician specialists in bone marrow failure disease who have worked with them in a significant way as speakers, writers, editors, and/or advisors. This map will allow you to search for physicians in your area by location using the zoom-in feature, by zip code, or by disease area utilizing the dropdowns provided below.

Please note:

  • This list is not comprehensive and there may be specialists in your area who have not yet been included.
  • Physicians may move to another institution for various reasons and may no longer be at the location noted on this map.
  • The map will be updated as often as possible.

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

2019-Health-Insurance-Employer-Individual-Plans-Quick-Guide-rev

Triage Cancer’s Quick Guide to Health Insurance: Medicare

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

2021-Medicare-Quick-Guide

 

LLS Financial Assistance Programs

This resource was originally published on Leukemia and Lymphoma Society here.

Applying for health insurance or filing health insurance claims can be a full-time job and extremely overwhelming to patients, their caregivers and families. There are many excellent guides and tools available to help in working through these challenges and determining which resources are available to them. The Leukemia & Lymphoma Society (LLS) offers the following financial assistance programs to help individuals with blood cancer.

For a summary of all LLS Patient Financial Assistance Programs, click here.

Co-Pay Assistance Program

LLS’s Co-Pay Assistance Program offers financial support toward the cost of insurance co-payments and/or insurance premium costs for prescription drugs. Patients must qualify both medically and financially for this program. Access the Copayment Assistance Resource Guide for Blood Cancer Patients for additional co-pay assistance resources.

Patient Financial Assistance Programs

Patient Aid Program

The LLS Patient Aid Program provides financial assistance to blood cancer patients in active treatment. Eligible patients will receive a $100 stipend.

Susan Lang Pay-It-Forward Patient Travel Assistance Program
LLS’s Susan Lang Pay-It-Forward Patient Travel Assistance Program is available to blood cancer patients, with significant financial need, who may qualify to receive financial assistance for approved expenses which include: ground transportation, air travel, and lodging related expenses.

Urgent Need Program
LLS’s Urgent Need Program, established in partnership with Moppie’s Love, is available to help pediatric and young adult blood cancer patients, or adult blood cancer patients enrolled in clinical trials, who are in acute financial need. The program provides eligible patients with assistance for non-medical expenses including rent, mortgage, lodging, utilities, childcare, elder care, food, transportation, car repair, car insurance, phone service, and acute dental work related to treatment.

Other Financial Aid
For information about other financial aid, click here.

Financial Assistance: Filling in the Gaps

This blog was originally published on Bone Marrow & Cancer Foundation here.

Lifeline Fund

The Lifeline Fund provides support to patients who often lack the financial resources necessary to afford the often overlooked living and ancillary expenses that can present considerable financial obstacles—or prohibit the transplant altogether. Funding from the Bone Marrow & Cancer Foundation’s Lifeline Fund helps to cover the myriad costs associated with transplants, such as donor searches, compatibility testing, bone marrow harvesting, medications, home and childcare services, medical equipment, transportation, cord blood banking, housing, and other expenses associated with the transplant. Health insurance often does not cover these vital support services, and many patients cannot afford them on their own.

Open Homes Medical Stays

Our partnership with Airbnb’s Open Homes Medical Stays program provides free temporary accommodations to patients diagnosed with any form of cancer or undergoing a hematopoietic stem cell transplant, as well as housing for their caregivers, family members, and donors.

One-to-One Funds

A One-to-One Fund is a personal fund created for a specific patient. It is a simple and effective way for a patient’s family, friends, and community to raise money on a patient’s behalf with all money raised going directly to their benefit. All donations are tax-deductible. The Bone Marrow & Cancer Foundation administers and maintains the fund, and can offer support with fundraising ideas.

Scholarship Grants

Scholarship Grants help make educational aspirations a reality for bone marrow, stem cell and cord blood transplant survivors. Transplants affect all aspects of life and often prohibit the pursuit of educational opportunities. To address this, the Bone Marrow & Cancer Foundation offers survivors support towards an academic future so their hopes and dreams remain intact. Scholarship Grants support students of all ages as they pursue their educational goals.

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.”