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Study: The hidden financial burden of treating cancer care symptoms

Drugs commonly used to treat symptoms of cancer and cancer treatment side effects can cost thousands of dollars out of pocket for patients, depending on what drugs are used. (Posted 6/29/2022). Este artículo está disponible en español.

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Most relevant for: People who are experiencing side effects due to cancer treatment or cancer..

It may also be relevant for:

people newly diagnosed with cancer
people with metastatic or advanced cancer
people with breast cancer
men with breast cancer
people with prostate cancer
people with endometrial cancer
people with ovarian cancer
people with prostate cancer
people with pancreatic cancer

Relevance: High

Strength of Science: Medium-High

Research Timeline: Post Approval

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Who covered this study?

Helio

Cost of drugs to control cancer-associated symptoms may add to patient financial toxicity
This article rates 4.0 out of 5 stars

Medscape

Drugs for symptom control add financial burden to patients with cancer
This article rates 4.0 out of 5 stars

At a glance	Questions for your doctor
Study findings	Guidelines
Strengths and limitations	Clinical trials
What does this mean for me?	Related resources
In-depth

STUDY AT A GLANCE

What is this study about?

Researchers were interested in determining how much patients who were without insurance or without drug coverage in their healthcare plan paid for medications to manage the side effects caused by cancer treatment and symptoms caused by cancer itself.

Why is this study important?

While much is known about the cost of cancer care and the financial burden anticancer drugs can put on a patient, less is known about how much patients must pay to cover the cost of treatment for the most common cancer-related side effects.

Medicare Part D users can pay up to $10,000 out of pocket for anti-cancer drugs. If those drugs cause nausea and vomiting or if pain medications cause constipation, how much do drugs to address these side effects add to these costs?

Many of the drugs used for symptom management are new, expensive, and have no generic counterpart. Some are not covered by insurance. Sometimes, these drugs are prescribed when other less expensive alternatives might be used instead.

Symptom control is often an urgent situation. When a patient is vomiting, for example, that does not leave time for a provider or patient to examine lower-cost options. More concerning is that not all these drugs have significant research that supports their effectiveness.

Close to 15 percent of patients under age 65 are uninsured; another 45 percent have limited insurance policies that only cover a small part of their care. These patients face disheartening costs associated with cancer care, but the impact of these costs hasn’t been well studied.

Study findings

After reviewing cancer care guidelines from a variety of organizations and societies, the researchers of this study compiled a list of medications that are used to address the most common symptoms associated with cancer care. They focused on symptoms that greatly impact patients’ quality of life and for which there are multiple treatments available, including:

Anorexia and cachexia (loss of appetite and/or unintended weight loss)
Fatigue
Chemotherapy-associated nausea and vomiting
Chemotherapy-associated peripheral neuropathy (nerve dysfunction, seen as weakness, numbness, or pain in limbs or digits)
Constipation
Diarrhea
Exocrine pancreatic insufficiency (a condition where a lack of or lower amounts of digestive enzymes lead to poor digestion)

Commonly used drugs were included in the study, even if data to support their effectiveness was limited. The researchers included all forms of medication that could be self-administered. Often, more than one formulation was available; that might include pills, extended-release caplets, liquids, injections or patches. The cost was calculated based on typically prescribed quantities.

Using the GoodRx website for Manhattan-area retail and low-cost prices associated with available coupons, the researchers found drugs available for symptom management as shown in the table below:

Symptom	Number of drugs*	Low-end cost	High-end cost
Anorexia	7 drugs	$5	$1,400
Fatigue	4 drugs	$17	$1,500
Chemotherapy-associated nausea and vomiting	10 drugs	$2	$1,400
Chemotherapy-associated peripheral neuropathy	6 drugs	$12	$1,426
Constipation	11 drugs	$1	$1,170
Diarrhea	3 drugs	$6	$122
Exocrine pancreatic insufficiency	1 drug	$1072	$1,860

*Different available forms of each type of drug were included
such pills, extended-release caplets, liquids, injections or patches.

Strengths and limitations

Strengths

Minimal research has been done on the financial impact of managing treatment side effects. This research fills an important gap.
The study reviewed the most common symptoms and the most common treatments for them, using a widely used website to obtain accurate costs for a particular treatment at a particular time.

Limitations

The study looked at costs for individuals without insurance or inadequate insurance, while most people had some coverage.
Costs changes were related to a specific time and place; thus, they may be widely different in another location at another time. In areas where there were no large pharmacies, there could be a large difference in price or the availability of coupons.
The cost to the average patient was not provided. While each patient may have a different set of treatment-related symptoms, it would be helpful to know how many medications an average patient takes for these purposes.
In some cases, the drugs for managing a symptom work differently, and some have risks and side effects. For example, dexamethasone is one of the drugs listed for fatigue. Although inexpensive, it has risks and side effects related to long-term use.
The study did not look at costs for non-medical options for managing side effects, such as acupuncture. These complementary or alternative therapies may not be covered by health insurance.

What does this mean for me?

If you or a loved one has cancer and are experiencing symptoms related to care, you may need one or more medications to make you feel better. These may be very expensive depending on your symptoms, the scope of your insurance coverage and where you live. However, there may be options available, including different formulations, generic drugs, financial assistance programs or over-the-counter treatments that work as well as some of the newer, more expensive treatments.

Ask your doctor which symptoms may occur with your cancer treatment and options for managing them. The costs of these drugs can vary significantly, and choosing over-the-counter or generic options could save you thousands of dollars.

In some cases, drug treatment may not be the best option, and talking to your provider about your concerns and goals could make you aware of other options. For example, some research suggests that acupuncture may improve neuropathy, and improving sleep can help deal with fatigue.

References

Gupta A, Nshuti L, Grewal US, Sedhom R, et al. Financial Burden of Drugs Prescribed for Cancer-Associated Symptoms. JCO Oncology Practice. 2022 Feb;18(2):140-147.

Disclosure: FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board before publication to assure scientific integrity.

Share your thoughts on this XRAY review by taking our brief survey.

posted 6/29/2022

This article is also relevant for:

people newly diagnosed with cancer
people with metastatic or advanced cancer
people with breast cancer
men with breast cancer
people with prostate cancer
people with endometrial cancer
people with ovarian cancer
people with prostate cancer
people with pancreatic cancer

IN-DEPTH REVIEW OF RESEARCH

Cancer patients experience financial burdens from over-the-counter and prescription drugs used to tackle the side effects of their chemotherapy, radiation and other main cancer treatments.

Researchers of this study wanted to know

The study authors wanted to examine the unexplored financial impact of treating the side effects of cancer care.

Populations looked at in this study

Patients who are without insurance, choose not to use their insurance or do not have drug coverage as part of their plan.

Study design

Researchers looked at cancer care guidelines and compiled a list of drugs used for the most common side effects of cancer treatment. Then in May 2021, using the GoodRx website and focusing on a single Zip Code in Manhattan, they looked at retail prices and the lowest out-of-pocket prices available to patients without insurance.

Study findings

The cost of drugs used to treat cancer symptoms can vary widely and be exceptionally expensive, especially when a patient needs a drug over an extended period of time or needs more than one drug. For the most common symptoms associated with cancer care, the cost for a round of treatment can range from one dollar to thousands of dollars.

For anorexia and cachexia (weight loss), 7 drugs were available in 20 formulations.
- The lowest costs were for a two-week supply of generic metoclopramide ($16) and mirtazapine ($20).
- The highest costs were for brand-name medications Megace ES ($729) and Syndros ($1,440).
- Low-cost options with coupons were available for olanzapine and mirtazapine, at $5; brand name options for megestrol acetate ($606) and dronabinol solutions ($1,156) were significantly more expensive.
- Costs varied based on the formulation and dosage of drugs, such as $5 for a generic olanzapine tablet or $239 for the brand name disintegrating tablet.
For cancer-associated fatigue, 4 drugs in 8 formulations were included in the study.
- A two-week supply of generic dexamethasone was $26, compared with $1,492 for the brand name modafinil tablet, which was the highest-cost agent. These drugs act differently in the body, and the former, a steroid, while significantly cheaper, can cause troublesome side effects.
  - With a coupon, prices ranged from $12 to $1,284 for these two drugs.
For preventing and treating chemotherapy-related nausea and vomiting, there were 10 drugs in 21 formulations.
- For Neruokinin-11 receptor antagonists administered with chemotherapy, there was generic aprepitant, a brand name version of aprepitant, brand name rolapitant, and a brand name combined NK1-receptor and serotonin antagonist netupitant and palonosetron capsule.
  - For a single chemotherapy cycle, drug costs ranged from a low of $174 (generic aprepitant) to $770 for the lowest cost brand name product.
- For NK1-receptor antagonists in a single chemo cycle, costs ranged from $11 for a generic ondansetron tablet to $683 for a brand-name granisetron transdermal patch.
  - While the total cost with coupons could be as low as $1 for a generic ondansetron tablet, the brand name transdermal patch could be as high as $605.
These drugs can be combined to prevent nausea and vomiting, depending on the type of chemotherapy treatment. The cost of these combinations can be as little as $181 or as much as $1,430.
- Breakthrough nausea and vomiting had 12 drugs in 23 formulations available.
  - For a week of the least expensive drug—generic metoclopramide—patients could pay just $8. The cost for brand-name dronabinol (Marinol, Syndros, Reduvo or Adversa) could be as high as $140.
    - The cost with coupons could be as low as $2 for olanzapine; $3 for metoclopramide, ondansetron, promethazine and lorazepam; and $5 for generic ondansetron disintegrating tablets.
- Different formulations of the same drug could also lead to significant price variations.
  - 15 units of ondansetron 4 mg varied from $3 for a generic tablet to $5 for a disintegrating tablet, $349 for a brand name tablet, and $516 for a brand name dissolving tablet.
For chemotherapy-related peripheral neuropathy, 6 drugs in 13 formulations were included.
- For a 30-day prescription, the retail cost ranged from $241 for generic duloxetine capsules to $637 for brand name Cymbalta.
  - The price with coupons could be as low as $15 for a generic compared to $1,168 for brand name nortriptyline.
For treatment of constipation, 11 drugs in 19 formulations were included.
- A two-week course of over-the-counter drugs like docusate or bisacodyl cost $4; a magnesium-based treatment was priced at $6. New drugs such as lubiprostone and methylnaltrexone were $1,001 and $1,170, respectively.
For treating diarrhea, 3 drugs in 6 formulations were included.
- For a one-week prescription, generic loperamide capsules were the lowest cost at $26, while the highest cost was brand-name diphenoxylate at $122.
  - Coupons could lower costs for generic cholestyramine packets to $6 and $95 for brand-name diphenoxylate and atropine tablets.
For managing exocrine pancreatic insufficiency (a digestive disorder) five brand-name formulations of one drug were included.
- For a 15-day fill, retail prices ranged from $1,288 to $1,860, and with coupons, from $1,072 to $1,514.

Strengths and limitations

Strengths

The strengths of this study include the novel look at drugs commonly used to treat cancer or help alleviate symptoms related to cancer. The study included the most common side effects and conditions and the drugs that are most often used to treat them. The information comes from a widely used prescription drug website, which includes prices for the largest chain pharmacies and includes information on available coupons.

Limitations

Researchers used data from a single Zip Code in a large metropolitan area at a specific time. Smaller cities and towns may not have access to the large retail chains and the lower prices and coupons they offer. The information also doesn’t apply to individuals with insurance, who may have significant copays or deductibles. Price changes, new drugs, older drugs with new formulations, generic versions, or dosing options may also affect the cost of these medications.

Conclusions

The financial impact of cancer is greater than previously reported. In part, this is due to elements such as the cost of drugs used to treat cancer symptoms and the side effects of cancer (rather than cancer treatment). These costs can be significant, and for those who are without insurance or adequate coverage, they can be a significant burden. Further research is needed to determine how the costs of these medications impact those with insurance.

Share your thoughts on this XRAY review by taking our brief survey.
posted 06/29/2022

Expert Guidelines

The National Comprehensive Cancer Network (NCCN) Practice Guidelines on Standards of include:

All cancer patients should be screened for palliative care needs at their initial visit, at appropriate intervals and as clinically indicated.
Patients/families/caregivers should be informed that palliative care is an integral part of their comprehensive cancer care.
Palliative care specialists should be readily available to provide consultation or direct care to patients/families/caregivers and/or healthcare professionals who request or require their expertise.

Patients, families or caregivers with any of the following conditions or situations should be referred for palliative care:

uncontrolled symptoms or pain
moderate-to-severe distress related to diagnosis or treatment
additional serious physical, psychiatric or psychosocial conditions
unresolved concerns or lack of understanding about the course of their disease
advanced cancers
evidence of worsening prognosis
communication barriers
financial limitations
family discord

Updated: 06/26/2024

Expert Guidelines

The American Society of Clinical Oncology (ASCO) endorses the Society for Integrative Oncology (SIO) guidelines recommending the following evidence-based integrative therapies for reducing fatigue, pain, anxiety and depression.

Fatigue

To reduce fatigue during cancer treatment, the SIO recommends:

Exercise
behavioral therapy (CBT) uses exercises and skills to reduce symptoms
Mindfulness-based programs
Tai chi, a Chinese martial art, is composed of gentle, low-impact exercises while focusing on deep, slow breathing
Qigong is a Chinese practice using movement, body posture, breathing and meditation to optimize energy within the body, mind and spirit.
American ginseng, an herb
Psychoeducation, an intervention for patients and their loved ones provides information and support to better understand and cope with illness

To reduce fatigue after cancer treatment the SIO recommends:

Exercise
CBT
Mindfulness-based programs
Yoga
Acupressure
Moxibustion (a type of therapy that involves burning the leaves of mugwort—a small spongy herb—close to the skin)

CBT and mindfulness-based programs are particularly effective for managing moderate to severe fatigue after treatment.

Pain

To reduce pain, the SIO recommends:

Acupuncture for aromatase inhibitor-related joint pain
Acupuncture, reflexology or acupressure for general cancer pain or musculoskeletal pain
Hypnosis for patients who experience pain after a procedure
Massage for patients experiencing pain during palliative care

ASCO provides guidelines on the use of opioids to reduce pain in cancer patients:

Should be offered to patients experiencing moderate-to-severe pain from cancer or cancer treatment
Starting dose should be the lowest possible
For patients with substance use issues, clinicians should collaborate with a palliative care, pain and/or substance use disorder specialist(s)
Patients should be monitored for adverse effects

Anxiety

To reduce anxiety during cancer treatment, the SIO recommends:

Mindfulness-based programs, yoga, relaxation, music therapy, reflexology and aromatherapy (using inhalation)

To reduce anxiety after cancer treatment, the SIO recommends:

Mindfulness-based programs, yoga, acupuncture, tai chi or qigong and reflexology

Depression

To reduce depression during treatment, the SIO recommends:

Mindfulness-based programs, yoga, music therapy, relaxation and reflexology.

To reduce depression after treatment, the SIO recommends:

Mindfulness-based programs, yoga, tai chi or qigong.

Updated: 07/02/2024

Expert Guidelines

The National Comprehensive Cancer Network (NCCN) in their Survivorship Guidelines has specific recommendations related to fatigue in people diagnosed with cancer.

Patients should be told that fatigue management is an important part of their care and that fatigue can persist even after treatment ends.
Patients should be screened for fatigue at their first visit and at regular intervals during and after treatment as indicated.
Treating fatigue is best managed by a team of experts with specialties in different areas of supportive care, including:
- survivorship
- palliative care
- nutrition
- integrative medicine
- mental health
- physical therapy
- occupational therapy
- sleep therapy
Patients should be screened and treated for symptoms that may be seen along with fatigue, including pain, emotional distress and sleep disruption.
Interventions may include:
- physical activity
- rehabilitation, physical therapy
- yoga
- acupunture
- massage therapy
- cognitive behavioral therapy
- nutrition consultation
- consider stimulant drugs
- treatment for sleep dysfunction

Updated: 08/06/2022

Questions To Ask Your Doctor

What is the cost of the medication prescribed?
Is a there a generic drug alternative available to treat my side effects?
Can I change anything in my daily life to avoid these side effects?
Would any non-pharmaceutical options help alleviate my symptoms?
Do you know of any coupons or copay assistance programs for this product?
Are options related to formulation (the way the drug is taken) or dose available that could lower my cost?

Open Clinical Trials

The following studies look at the management of side effects:

Multiple cancers

NCT02296450: Quality of Life (QoL) Assessment in Cancer Patients and Survivors With Dermatologic Conditions Using Dermatologic QoL Instruments. This large study examines how skin conditions that are related to different kinds of cancer or cancer treatments affect a patient's overall well-being.
NCT05056077: Tools to be Fit. This quality-of-life study examines the best tools for helping cancer survivors improve their diet, and exercise for people with bladder, breast, colon, endometrial, kidney (renal cell carcinoma), ovarian, or rectal cancer.
NCT03996265: Bupropion in Reducing Cancer Related Fatigue in Cancer Survivors. This study tests how well the drug bupropion (Wellbutrin) reduces cancer-related fatigue for survivors.

Breast cancer

NCT04586530: Telehealth and Memory Study (TAMS). This trial seeks to confirm the effectiveness of Memory and Attention Adaptation Training (TAMS), a cognitive-behavioral therapy as a treatment for chemotherapy-related cognitive dysfunction among breast cancer survivors.
NCT02290834: Chemotherapy-induced cognitive and brain changes in older adults with breast cancer. This study investigates cognitive abilities and brain images before and after chemotherapy to identify people at risk for cognitive side effects and to better understand the effects of treatment on brain structure and function.
NCT03879629: TrAstuzumab Cardiomyopathy Therapeutic Intervention With Carvedilol (TACTIC). Breast cancer patients receiving Herceptin or other HER2-directed therapy are at risk of heart damage. This study looks at whether beta-blocker drugs could help prevent this from happening.

Colorectal cancer

NCT05239338: Preserving Fertility After Colorectal Cancer Study (PREFACE). This study investigates the reproductive health and clinical outcomes among individuals ages 18 to 49 who are diagnosed with colorectal cancer.
NCT06420726: Resistance Exercise and Creatine in Colorectal Cancer. This study assesses the feasibility of combining creatine supplementation with resistance training versus resistance training alone in colorectal cancer survivors.

Ovarian cancer

NCT05047926: Prehabilitation for Advanced Ovarian Cancer Patients. This study tests whether structured activity for women undergoing chemotherapy improves their physical state before surgery and thus improves outcomes.