Brought to you in partnership with the Multiple Myeloma Research Foundation
Don’t overlook clinical trials as a treatment option. Clinical trials can be essential in determining why myeloma affects Black people differently than other races, and can potentially improve treatment options for black patients.
Here are a few things to know about clinical trials:
Broadly, there are three types of clinical trials:
- Phase 1 trials determine safety and dosage, as well as how the drug is absorbed and acts in the body.
- Phase 2 trials evaluate effectiveness and safety.
- Phase 3 trials compare the effectiveness and safety of the new drug with those of standard treatments.
What to expect from clinical trials
- In addition to the new drugs currently being studied in clinical trials, drugs that have been previously approved to treat other diseases are being examined in clinical trials to determine whether they may be effective for treating multiple myeloma.
- Despite patients worrying that they will only receive a placebo, all patients in a clinical trial receive effective treatment. One set of patients receives standard treatment (called the standard of care group) and the other set of patients receives the new treatment (called the new treatment group).
- Physicians and nurses who conduct clinical trials are always the most familiar with the latest research and treatments, and the trials often take place at larger research institutions.
- If you don’t live near the research institution, it may be possible for your care to be conducted in the office of your own oncologist, or your travel may be limited to a small number of visits to the larger institution.
- If you decide to participate in a clinical trial, you will receive a consent form that serves as your guide to all of the important information you need to know about the trial.
- In any clinical trial, you are allowed to quit at any point, for any reason.
Why clinical trials are important
If Black patients are not included in clinical trials, the information will not be reflective of all races. As a result, pharmaceutical companies and medical professionals will have to make assumptions on how various drugs work across racial lines.
“We are all human, but we are different, and yes, even different populations of people require modified medical responses,” Dr. Danielle N. Lee, Assistant Professor of Biological Sciences at Southern Illinois University says. There are many factors that may influence why Black patients are underrepresented in clinical trials:
- Unwillingness to refer patients for trials
- Fear that clinical trials create a financial or administrative burden to the practice
- Lack of clinical trial availability
- Few minority investigators
- Lack of knowledge
- Cultural differences
- Mistrust of the medical or research systems
- Perceived risk of harm
- Lack of transportation
- Lack of education about clinical trials
- Time commitment and conflicts
- Fear of clinical procedures
- Family issues
“One of the critiques with science and medical research is that communities of color, and black communities in particular, regard ourselves as outsiders of science,” Dr. Lee adds. “We are othered.”
Another reason Black people are often excluded from clinical trials is because many health restrictions are placed on clinical trials such as not wanting people who have high blood pressure or a history of stroke, which are conditions that affect Blacks at higher rates. This can eliminate millions of Black candidates from participating.
What’s the solution?
“Tailoring your care plan to break down these barriers is the next step. Examples include facilitating access for patients to receive care by myeloma specialists, recognizing stem cell transplant eligibility at diagnosis, assisting adherence to therapeutics and supportive care and counseling patients on the value of clinical trial participation,” practitioner Amy Pierre tells MMRF.
For many people with multiple myeloma, participation in a clinical trial may be a good option for treatment. Therefore, it’s important to find solutions to the factors that are causing Black people to be left out of clinical trials.
Conversation: The first step to more inclusive clinical trials is through discussion. Black people need to be included in discussions so that they can give their input and voice their concerns. This will prevent medical professionals from making assumptions about the best way to reach them.
One way this can be done is by including Blacks in both volunteer and clinical roles during the research process to increase accountability in treatment, education, and advocacy.
Representation: Black people often have a mistrust of medical professionals due to their history. For this reason, it’s important Black doctors are included in clinical trials. This can eliminate the cultural barrier between many doctors and Black patients.
“Unfortunately, our country has a history of unethical medical treatment of minorities. We can build rapport and trust by recognizing our own implicit bias that exists and addressing it, showing respect for cultural diversity, displaying a willingness to learn from patients, having an ethnically diverse healthcare team, investing in and gaining the trust of those who assist your patient in decision making, and avoiding stereotyping and generalizations,” Pierre adds.
Finding Clinical Trials
It is important that you talk with your doctor about which clinical trials are available and whether one of them may be right for you. If your doctor refuses to refer you, you should seek another doctor. It’s important that you feel heard and are presented with every possible treatment option.
If you are unsure of where to get started, MMRF has several resources to help you with your clinical trial journey. These resources are designed to get the research needed to collect comprehensive genomic and clinical data, which will lead to the advancement and delivery of the right treatment for each patient:
- MyDRUG: Unlike traditional clinical trials, which test one drug or a single combination of drugs, the MyDRUG clinical trial tests the impact of several different drugs on different genetic mutations. This not only quickens the speed by which new treatments are tested but also more efficiently matches patients to treatments that are most likely to be beneficial.
- MMRF CureCloud®: The MMRF CureCloud is the next step to find treatments for each and every patient, no matter their subtype. It helps researchers discover new targets for myeloma and form hypotheses for clinical trials. It is also essential in aiding patients and their physicians in making more informed, data-driven decisions.
- The MMRF CoMMpass℠ Study: The MMRF CoMMpass Study was designed to provide researchers with as much information as possible about myeloma, by studying more than a thousand patients over the course of their myeloma, starting when they were newly diagnosed, and collecting all of their data.
If you are interested in participating in a clinical trial, you can utilize the MMRF’s Patient Navigator to talk to an expert about clinical trial options. The Clinical Trial Finder is another great tool to find clinical trials near you.
Clinical trials are important to the development of new multiple myeloma treatments, but especially for Black patients. Myeloma may affect Blacks differently, but the research that clinical trials are doing is crucial in bridging the gap in the level of care and treatments that Blacks are receiving.