Joining a clinical trial after your transplant: How it may help you and others

Posted November 6th, 2017 by Be The Match and filed in Patient Stories
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Before your transplant, you may have been asked to join a clinical trial, also known as a research study. A clinical trial is a way for doctors to gather information about how well a specific treatment might work, such as a new way to prepare patients for a blood or marrow transplant (BMT).

But there are also many research studies you can join after BMT, including studies testing new treatments for BMT complications like graft-versus-host disease (GVHD). In other cases, there are clinical trials testing whether new drugs can help BMT recipients recover faster.

That was the case with Adam, who had a BMT to treat acute myeloid leukemia (AML). He decided to join a clinical trial testing a new drug. “It’s a study to see if this drug taken as a maintenance drug after BMT does anything to help patients do better,” he says.

Clinical trials can help improve outcomes (results) for patients. They can also help doctors make important discoveries that may help future patients. For Adam, both factors were important to him when he was deciding whether or not to join the research study.

“To be honest, I asked what the benefits were for me,” he says. His doctor didn’t know if it would help him. But as Adam thought more about it, he began to think less about the benefit for himself and more about how the research could be useful for others. “The benefits are for future use of the drug, and future patients,” he says. “That was my motivation.”

There can be both risks and benefits to patients joining research studies, says Scott Kerwin, MN, RN, Clinical Trial Patient Education Specialist at Be The Match. “Joining a clinical trial is a very personal choice,” he says.

Most of the newest treatments are only available to patients through clinical trials, according to Scott. They may be very appealing to patients who haven’t gotten better with standard treatments and have few other options, he says.

Another benefit, Scott notes, is that often a patient’s health will be more closely monitored due to the extra visits, procedures, scans and data collection as part of the clinical trial. For Adam, he was concerned about those extra appointments at first. He says, “I’m given enough pills for 1 month. I thought getting back to the clinic each month for pills would be an issue. But it hasn’t been difficult. I’m in the 11th month now.”

Some risks include receiving drugs or other therapies that are unproven or have never been tested. According to Scott, there is always a chance that a new treatment may have dangerous side effects. This was also true for Adam. “I had a lot of fatigue. That made me want to reconsider. They took me off the pills for a couple weeks. I immediately felt better, then went back on,” he says.

Scott recommends that you ask the clinical trial doctors questions before you decide whether to join, such as:

  • What is the new treatment being tested in this trial and why do you think this could benefit me?
  • What are the risks in this trial? Do you know what the side effects may be? Have other people who have been in this trial had any problems?
  • Will I need to stay in the hospital longer? How long will the trial last?
  • Will my insurance cover the costs of the trial? If not, will the clinical trial pay for the costs?

If you think you might want to join a clinical trial, Be The Match can help you find one that is a good fit for you. The Jason Carter Clinical Trials Program was created for patients and their families, to make it easier to find and join clinical trials. The free program provides:

  • One-on-one support from a clinical trials specialist for patients and families. If you’d like help finding a clinical trial, call Scott at 1 (888) 814-8610 or e-mail clinicaltrials@jcctp.org. He can answer your questions and help you find a trial.
  • An easy-to-use web-based search tool to find relevant clinical trials related to blood cancers, blood disorders and BMT complications, like GVHD
  • Educational resources for patients and families to help them learn about clinical trials

If you’re concerned about the cost of traveling to join a clinical trial, talk to your health care team to find out if you qualify for financial assistance from the Drs. Jeffrey and Isabel Chell Clinical Trials Travel Grant. Eligibility information and the application are available at www.jcctp.org.

For his part, Adam says he is glad he decided to join the clinical trial, and that he continued with it despite having some side effects from the drug. He decided to continue, he says, because doing so might help future patients. “Basically, if we want to advance science, then the more the doctors can learn, the better.”

Affordable Care Act Series: Part 2: New Coverage for Clinical Trials

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Penny_Laing_NY_2009_7952As part of our ongoing series on the Affordable Care Act (ACA) and the changes that affect  transplant patients and recipients, we look at coverage changes related to clinical trials.

Have you ever considered participating in a clinical trial—but didn’t after learning your insurance wouldn’t cover the costs?  Recent changes from the Affordable Care Act (ACA), may allow you to reconsider.

Before the ACA, many clinical trials were not covered by insurers. This often meant that patients were unable to participate in them. Now, for approved clinical trials*, the ACA requires insurers to pay for items and services they would have paid for if the patient was not enrolled in the clinical trial. This change will allow more patients to participate to get the care they need.

This change of the ACA applies to all “non-grandfathered” health insurance plans. Non-grandfathered health insurance plans are plans that have made significant changes to their benefit structures and must comply with ACA requirements. While most plans will be non-grandfathered as of January 1, 2014, you should check with your insurance company if you have questions about the status of your health insurance plan.

There are many active BMT clinical trials studying disease treatments, graft-versus-host disease, post-transplant complications, and many other topics. To learn more about clinical trials, you can talk to your doctor or visit bethematch.org/patient. You can also visit clinicaltrials.gov.

We are here to help

Watch for more information about the ACA changes in upcoming editions of Living Now e-newsletter. If you have questions or need more information, please contact Be The Match at (888) 999-6743 or email patientinfo@nmdp.org.

*An approved clinical trial is one that is conducted for cancer or another life-threatening disease or condition and is federally funded. In order for a clinical trial to be considered federally funded it must be approved and funded by one the following organizations: National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), Agency for Health Care Research and Quality (AHRQ), Food and Drug Administration (FDA), Centers for Medicare and Medicaid Services (CMS).