While some treatments for hematologic conditions such as sickle cell disease (SCD) and cancer, have been refined over time – increasing survival rates and decreasing side effects – patients with SCD frequently still suffer painful episodes resistant to existing treatment options, and those with cancer often feel worse (at least temporarily) while receiving chemotherapy, radiation, and other conventional therapies. These realities can make alternative treatments appealing options.
Complementary and alternative medicines predate Western medicines and persist in their appeal, and physicians are noticing their patients using some type of unconventional treatment with greater frequency – such as incorporating acupuncture into a treatment plan or forgoing conventional treatment altogether in favor of herbal supplements or other untested options they believe are more likely to cure their ills.
Although it may avoid side effects of chemotherapy, refusing conventional treatment can increase patients’ risk of dying from his or her disease.1
The strategy is so dangerous that law enforcement has stepped in when parents have refused conventional treatments for their children. In September 2019, a couple in Florida lost custody of their toddler with leukemia after they decided to take him to a naturopath instead of his third chemotherapy appointment.2
Despite the dangers of skipping traditional treatments for hematologic diseases, many health care providers believe that including at least some type of complementary medicine in a patients’ treatment plans may be desirable, and even beneficial.
Large cancer centers are opening what they call “integrative†or “comprehensive†centers that encourage patients to use some of the therapies that weren’t previously considered part of conventional therapy, under the supervision of physicians and in conjunction with traditional methods. Health care professionals and patients hope that the therapies will mitigate symptoms or side effects of conventional treatments.
Moreover, some clinicians hope that acknowledging the value of these methods will deter patients from skipping treatment in favor of dangerous alternatives.
“The worst thing that we can do as providers is create an environment where patients don’t feel safe talking to us about what they’re interested in trying [to treat their cancers],†Skyler Johnson, MD, an oncologist at Yale University School of Medicine who studies cancer outcomes, told ASH Clinical News. “There’s a chance that they will do it anyway, unbeknown to us.â€
ASH Clinical News spoke with Dr. Johnson and several other professionals working with patients open to integrative therapies about how these treatments are being used by patients with blood disorders, the evidence supporting the benefits and harms of these methods, and ethical considerations for implementing them in the clinic.
Alternative, Complementary, Integrative: What’s in a Name?
Any health care approach that is not typically part of conventional treatment or has origins outside of Western practice could be considered alternative or complementary medicine. The distinction comes with the relationship to standard treatments, according to the National Institutes of Health’s (NIH’s) National Center for Complementary and Integrative Health (NCCIH).3
If a nonmainstream practice is used together with conventional medicine, it’s considered “complementary.†If a nonmainstream practice is used in place of conventional medicine, it’s considered “alternative.â€
According to a 2018 survey by the American Society of Clinical Oncology, nearly 40% of people in the U.S. believe that cancer can be cured by alternative therapies alone.4 This belief can be deadly: Patients who forgo conventional cancer treatment and opt only for alternative treatments are 2.5 times more likely to die from the disease.¹ Alternative therapies, often marketed as “cancer cures,†can include unproven treatments such as intravenous vitamin C infusions, enzyme and oxygen therapy, herbal supplements, and baking soda infusions.
Still, more and more scientists are encouraging research into certain types of therapies that fall outside of conventional disease treatment – such as yoga, massage, meditation, and mindfulness. These modalities can be helpful when incorporated into interdisciplinary treatment plans, in conjunction with traditional methods, they argue.
This type of interdisciplinary approach, which brings together conventional and complementary therapies, is referred to as “integrative†medicine. It emphasizes a holistic, patient-focused method of care by addressing the mental, emotional, functional, spiritual, social, and community aspects of a patient’s wellbeing.3 Doctors who practice integrative care work to understand how yoga, acupuncture, and other techniques could mitigate side effects and increase patients’ quality of life, while ensuring that people also receive conventional therapies to cure or manage their disease.
When Dr. Johnson was in medical school, his wife was diagnosed with Hodgkin lymphoma. Like many of today’s patients and caregivers facing a scary diagnosis, he consulted “Dr. Google.†The desire to gather information on the treatment and prognosis of Hodgkin lymphoma was “human nature,†Dr. Johnson said.
“It was really eye-opening for me to be able to see how much misinformation actually existed out there on the internet – and it was shocking how some of it appeared legitimate,†he said. “I thought to myself, ‘How would somebody without any medical background be able to discern what’s accurate and what’s inaccurate?’â€
Combating Misinformation
Alternative medicines, offered by doctors, naturopaths, or even people with no medical experience at all, have always been available. Desperate patients disappointed by the risk-benefit profiles of current treatments or who distrust conventional medicine have sought them out in hopes of curing cancers and other diseases. Today, the internet and social media can make finding information about diseases and treatments both faster and more confusing than ever.
Like Dr. Johnson, many patients and family members scour the internet before or during treatment. Some might find resources from reputable sources like the National Cancer Institute or large health care organizations; others might stumble upon alternative sources that are just as convincing, but with contradictory advice to forgo conventional therapy.
One woman with no medical credentials sold the chemical GcMAF as a cure for both late-stage cancers and autism through a private Facebook group.5 The product was unproven and unlicensed, but frustrated patients spent up to tens of thousands of dollars to purchase the chemical or receive GcMAF injections at her “clinic.†Eventually her account was shut down, but many similar groups still flourish. One of the issues with curbing the spread of misinformation, according to a Washington Post story, is that social media algorithms may connect innocuous searches (like one for a smoothie recipe) to posts with serious medical claims (like a recipe and testimonial for a smoothie that “kills cancer cellsâ€).6 And, even if a person deliberately searches for traditional cancer treatments, misinformation can show up troublingly early in the search results, making it appear legitimate.
From “Quackery†to Complementary
David S. Rosenthal, MD, a hematologist at the Dana-Farber Cancer Institute, was deeply involved with integrative and alternative medicine in the early 1970s, when the American Medical Association appointed him to its Committee on Quackery. Times have changed since the mid-1970s, when the committee was disbanded, and a growing number of doctors are tentatively getting on board with addressing – and sometimes even offering – complementary and integrative therapies for their patients.
Dr. Rosenthal now directs Dana-Farber’s Leonard P. Zakim Center for Integrative Therapies and Healthy Living, a post he has held since 2000. “Obviously, there was quackery and there still is quackery,†he said, “but what we’ve done over the years is modified [our discussions] so that we’re talking about approaches that are done alongside standard treatments.â€
He and his group at the Zakim Center began exploring complementary therapies back in 2000, starting with acupuncture and massage. The center offers these treatments to patients with cancer, as well as reiki, art therapy, meditation, yoga, exercise, and nutritional counseling. These methods “can help patients feel better by reducing the pain, stress, and anxiety caused by cancer and its treatment.â€7
Many other large treatment centers have developed similar departments to support patients who are interested in trying these therapies in conjunction with conventional treatment: The University of Arizona’s Andrew Weil Center for Integrative Medicine has been training physicians in integrative approaches to care for 25 years; and the Memorial Sloan Kettering Cancer Center operates the Bendheim Integrative Medicine Center.
In addition to treatment centers working to fund and provide integrative treatments, the National Cancer Institute (NCI) opened the Office of Cancer Complementary and Alternative Medicine (OCCAM) in 1998. The program offers grants to study complementary treatments and highlights the results on its website.8 However, many researchers contend that funding for research on complementary medicine is still lacking.
While encouraging conversations and offering certain integrative therapies may prevent some patients from engaging in dangerous alternative options and forgoing treatment, there are still questions about who uses complementary medicine and how it affects their other care decisions, Dr. Johnson noted. He recently conducted a study to identify characteristics that make patients with cancer more likely to pursue complementary medicine – and whether use of these therapies affects adherence to conventional treatments or has any effect on survival.9
The data revealed a troubling pattern: Patients who received complementary medicine had lower rates of five-year overall survival, compared with those who received no complementary medicine, and patients who engaged with these therapies were more likely to refuse other conventional cancer treatment. Patients who used complementary medicines were more likely than others to pick and choose their conventional therapies “à la carte,†explained Dr. Johnson. For example, people may accept surgery but refuse radiation, therefore weakening the efficacy of their overall treatment.
He added that the question of “whether including [integrative specialists] in these conversations actually can modify behavior in patients who are interested in alternative therapies is fascinating and needs to be studied further.â€
Natural Does Not Always Mean Safe
Most, if not all groups that offer complementary medicine endorse mind-body methods such as acupuncture, massage, tai chi, and meditation. These options are less controversial, and possibly less likely to be mistaken for a treatment that can replace conventional therapies.
Acupuncture is one of the most researched forms of complementary medicine, with studies suggesting it can be useful for managing pain, neuropathy, anxiety, and nausea – symptoms commonly experienced during cancer treatment.10 A search on ClinicalTrials.gov identifies more than a thousand clinical trials that are testing the therapy’s ability to treat these types of side effects.
While doctors are more likely to recommend mind-body treatments like yoga and acupuncture as complementary treatments, a small 2015 survey of German patients and physicians suggested that patients were less enthusiastic about these options and showed far more interest in “biological interventions†such as vitamins, supplements, and herbs.11
Research on these types of interventions suggests that, while some modalities may alleviate some treatment side effects, others may interfere with conventional treatment, rendering it less effective or possibly even harmful. For example, while OCCAM cites research showing that ginger can help patients manage nausea, NCI-funded research has shown that certain antioxidants – usually considered safe for healthy individuals – can interfere with the efficacy of chemotherapy agents like imatinib.12
Alternative medicines also are not put through the same rigorous testing and regulations as traditional medications. Dr. Rosenthal recalled the case of PC-SPES, a mixture of eight herbs that was thought to be promising for the treatment of prostate cancer when it became commercially available in 1996.13 The treatment was believed to slow the growth of prostate cancer cells, but it was later found that the mixture contained some prescription drugs and hormones. Some patients had issues with bleeding. Each lot seemed to contain a different amount of various prescription medications. It was taken off the market in 2002 and is no longer sold in the U.S. It’s not clear whether its original positive effects were due to the combination of herbs or the other medicines that contaminated them. “That’s the kind of difficulty we get into with herbal therapy,†said Dr. Rosenthal.
Another challenge is that patients sometimes disagree with their physicians on the value of certain complementary medicines, according to Kenneth Adler, MD, who is co-liaison to the ASH Committee on Practice from the ASH Practice Partnership. In these instances, said Dr. Adler, a hematologist and oncologist at the Summit Medical Group in New Jersey, his best option is to enlist other doctors in the discussions. He will refer his patient to a “reasonable physician who offers opinions about complementary medicine,†as well as another conventional doctor.
An Alternative to Sickle Cell Pain?
For patients with sickle cell disease (SCD), pain is not just a side effect of treatment, but a lifelong symptom that can worsen with age. The pain often comes on in intense bursts, lasting hours to weeks, that can send patients to the emergency room. Some patients also develop chronic pain.
Deepika Darbari, MD, who treats pediatric patients with SCD at Children’s National in Washington, DC, explained that often, opioids to treat the pain aren’t enough. Dr. Darbari works with an interdisciplinary treatment team that ensures all of her patients are seen not only by a hematologist such as herself, but also by a psychologist, a social worker, an anesthesiologist, a licensed acupuncture specialist, and a palliative care specialist who can administer aromatherapy. She also recommends heat packs and massages for pain management.
While these services are offered through the hospital, patients (and their families) are mostly responsible for selecting their own complementary therapies – and sometimes for paying for them as well. It can be a difficult choice when the evidence for any of these pain treatment options is limited. Dr. Darbari and her team offer each patient all the complementary options available and let them choose what they are interested in trying.
To build up the evidence base for complementary pain management techniques, Dr. Darbari’s team is running a clinical trial on the effects of acupuncture on SCD–related pain. She hopes that better evidence will guide the treatment she delivers and will encourage more insurance companies to cover these options for her patients.
Working Outside the Box
Patients can easily access all types of information through a Google search, but where do clinicians turn for guidance about complementary, integrative, and alternative medicines?
Some professional societies have published guidelines for the use of unconventional techniques in practice, but Dr. Adler pointed out that they are not appropriate for all patients. The Society of Integrative Oncology (SIO) has developed recommendations for incorporating complementary medicine in breast cancer treatment, for example, but solid tumor cancers are not the same as hematologic malignancies, for which the group has not yet published any guidelines.14
The NCCIH collects clinical practice guidelines created by other organizations on its website, which includes two oncology-related resources – the SIO document and guidelines regarding exercise for cancer survivors – but provides little else for patients.15 Several guidelines address pain and suggest the use of mind-body techniques, but they are not specific to pain associated with hematologic or solid tumor malignancies.
Sandra Kurtin, PhD, ANP-C, AOCN, a nurse at the University of Arizona Cancer Center, regularly uses the Natural Medicines Database, a searchable database that lists what’s known about the efficacies or interactions of different so-called “natural medicines†that her patients may be taking. “The big thing is to tell the patient, ‘Let us know what you’re doing so we are sure that there isn’t some kind of contraindication,’†she said. Dr. Kurtin errs on the side of caution: If she doesn’t find much information about a particular herb or supplement, she’ll suggest a patient not use it during active treatment.
While guidelines about which complementary therapies are most effective may be incomplete, most groups, including the NIH and SIO, are encouraging physicians to ask patients what treatments they are using on their own. “We’re trying to educate the physicians to ask and the patients to tell,†said Dr. Rosenthal.
This is one of the reasons many doctors believe it’s worthwhile to have an integrative medicine specialist included on the interdisciplinary care team. Dr. Rosenthal called involving a specialist a “no-brainer.†Dr. Kurtin put it succinctly: “Patients get to choose [their treatment]. It’s their lives and their bodies. Our job is just to tell them what we know and what we don’t know.†—By Emma Yasinski