How to Navigate a Drug Shortage as a Patient
- When cancer drugs are in short supply, the idea of not being able to get your usual cancer treatment – or treatment you hoped to have – can leave patients confused and anxious.
- But there are steps patients can take to make sure they get the treatment they need.
- People are encouraged to ask their doctors lots of questions about any other treatment options that may be right for their disease. Bringing a loved one with you to your appointment can offer moral support, or they can help you take notes on the information.
- Patient navigators and social workers can help patients navigate the system, such as traveling to a new facility for treatment with more supply or planning what questions to ask.
- But getting different therapies may bring new financial concerns too. There are local and national organizations that may be able to help cover your treatment costs if you’re struggling to pay your bills.
If you’re being told your chemotherapy drugs or other cancer treatment isn’t available, know that there are steps you can take to make sure you get the care you need.
Read MoreGuidance for Patients During a Drug Shortage
Cancer survivors and their loved ones helping them along their journeys may be wondering what to do if the cancer drug they need is not available. SurvivorNet spoke with experts like social workers and patient navigators to provide some recommendations that can help people find solutions.
Push for answers.
Bring a care partner with you to your appointments to help you listen, take notes, and process the information being given to you. This could include a spouse, partner, friend or other loved one. Don't rest until you are satisfied with your care and the decision-making process.
Evaluate other options.
In most cases, there are other options for treatment. According to physicians who spoke to SurvivorNet, evaluating other potential treatment options when the specific drug you are used to is not available is a conversation that should be had with your care team.
Be sure to ask about the effectiveness of the other options and if they have different side effects than you’re used to.
Seek out a patient navigator.
Knowing the right questions to ask or who to contact can be a daunting task, but patient navigators are there to help. They provide personalized support for patients.
"Patient navigators can function differently at different hospitals," Dr. Kathie-Ann Joseph, a surgical oncologist at NYU Langone Health Perlmutter Cancer Center, told SurvivorNet.
We have a really wonderful program at [NYU] where we use lay navigators, meaning they are not nurses.” Although you can use nurses or social workers, that pretty much help newly diagnosed cancer patients through the continuum of care," Dr. Joseph added.
Connect with an oncology social worker.
Like patient navigators, oncology social workers are there to help you get answers to questions and provide emotional support. Oncology social workers are licensed professionals trained to help people affected by cancer.
Consider traveling.
While traveling to a different area to get the cancer drug you need is not always feasible, it should be considered. Try calling various pharmacies and hospitals to determine treatment availability. If transportation is a barrier, talk with a social worker or patient navigator about what resources are available to help you.
WATCH: The value of patient navigators.
When You Can’t Afford Your Treatment
It’s important to recognize that a drug shortage can also leave patients with higher care costs. That could be because you have to go to a new facility or pharmacy for your treatment, or you have to get a different treatment altogether – and those details may affect how your insurance covers the therapy.
This financial burden can be a significant challenge for people already facing a difficult situation. However, there are local and national organizations available to help you when you are struggling to pay your bills.
Here are some examples of programs and organizations that may be able to help with bills associated with cancer treatment:
For Help With Treatment Bills
- The Cancer Financial Assistance Coalition can direct patients and their families to available local services.
- Many treatment centers offer extended payment plans, and some may offer temporary payment delays, according to the American Cancer Society.
- CancerCare, which connects patients with oncology social workers, may be able to assist with co-pays, transportation, and other costs associated with care.
- The HealthWell Foundation may be able to help uninsured patients pay for treatment.
- The American Cancer Society may be able to link patients and their families with local resources (they offer a 24/7 helpline).
- The Patient Advocate Foundation (PAF) works with patients and their insurance companies to resolve issues and may provide direct financial support to some patients.
- The Patient Access Network Foundation may be able to help with out-of-pocket costs associated with cancer treatment.
For Help With Transportation and/or Housing
- There are several programs that may be able to assist patients if they need to travel by plane to get treatment, including Air Care Alliance, the Corporate Angel Network, and PALS (Patient Airlift Services).
- Patients with Medicaid may be entitled to help pay for transportation costs to and from treatment.
- The American Cancer Society’s Road to Recovery program can hook patients and their families up with volunteer drivers.
- Mercy Medical Angels may be able to help patients and their families pay for transportation.
- The Healthcare Hospitality Network can assist with housing if a patient must be treated far from home.
- The American Cancer Society Hope Lodge Program gives patients and their caregivers a free place to stay during treatment in dozens of cities across the U.S. and Puerto Rico.
For Help With Food
- Food assistance may be available to people going through cancer treatment and their caregivers. Look into the Supplemental Nutrition Assistance Program – aka SNAP – or a program like Meals on Wheels.
Help With Navigating Cancer Treatment
Questions to Ask Your Doctor
If you are concerned about the impact a drug shortage could have on your treatment, consider the following questions for your doctor:
- Are the drugs used for my cancer treatment being impacted by the drug shortage?
- How will a dosage reduction impact the effectiveness of my treatment?
- Are there other drugs available to effectively treat my cancer?
- Are there other side effects associated with those drugs?
- Once drug supplies return to normal levels, will I be able to restart my primary treatment immediately?
- How will changing my treatment plan affect the cost of my care?
- What support services are available to me during this time?
Coping With Cancer Treatment and Bills
Another component of dealing with a drug shortage, a change in your treatment plan, or new financial costs is managing the emotions that come with it all.
Financial toxicity is a term that has been coined to describe the difficult financial impact cancer treatment brings. Dr. Marianna Strongin, a New York-based clinical psychologist, suggests reframing your thinking around your finances to cope.
“You might be feeling as though not having savings and taking out loans means you have no security or freedom,” she previously wrote for SurvivorNet.
“If this resonates, then it will be very important that we reframe our thinking and create a ‘grey’ thought like, ‘Just because I am taking a loan or using some of my saved money, does not mean that I will run out of money.’ Another ‘grey’ thought might be, ‘If money is for security, then using it on my health is exactly what it is for. Simply restating it away from such extremes allows us to better accept our reality.”
Survivors may also experience fear and anxiety when their treatment plan needs to change, and they may have lingering questions about what’s coming next. Several mental health experts we spoke to say it’s important to acknowledge these feelings so you can move forward.
“What really important is to pay attention to is what those questions are, what the frequency of those questions are, and how you answer them,” Strongin said.
Psychiatrist Dr. Lori Plutchik suggests seeking professional help if and when you need an extra hand, which could include talk therapy or medication.
Other ways to manage your emotions and mental health include changing lifestyle habits (like exercise and diet), seeking out a support group, or meditating.
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