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Affording Leukemia Care: How Your Doctor Can Help

Posted on April 01, 2022
Medically reviewed by
Todd Gersten, M.D.
Article written by
Nyaka Mwanza

The cost of medical treatment is high and continues to rise. This is especially true when it comes to leukemia care. Many people with leukemia find themselves unable to afford some of their leukemia treatments. Even those who have health insurance may have issues paying for treatment and care.

“How do you afford the medicine?” one MyLeukemiaTeam member asked. Another said, “I will be starting Medicare in January, and even with the prescription supplement plan, I will be paying out of pocket more than I can afford for my medication.”

You trust your doctor to answer questions about your cancer treatment. Your doctor can also be a trustworthy source for questions about how to manage leukemia care costs.

The High Cost of Leukemia Care

Receiving a leukemia diagnosis is a life-changing experience. Not only does it affect your health and lifestyle, but it can also be a burden on your financial well-being. People living with leukemia may lose wages from missing work, in addition to large out-of-pocket expenses for infusions, prescriptions, and procedures.

One study put the average three-year cost of leukemia care between $200,000 and $800,000, with the highest cost burden during the first year following diagnosis. In reality, a leukemia diagnosis means needing financial help of some sort for most people.

Some cancer drugs cost $100,000 or more for a year’s worth of treatment. That’s well above the average annual salary in the United States, which hovers around $50,000 per year.

The good news is that approximately 90 percent of people in America have some form of health insurance, in large part thanks to the Affordable Care Act. The bad news: Insurance has its limitations, and it does not guarantee access or affordability. You may find it beneficial to switch plans, purchase additional insurance, or get supplementary financial aid and support services. Additionally, for those with employer-sponsored health coverage, being unable to work during the course of leukemia treatment is always a looming threat.

How Can Your Doctor Help?

A doctor’s job includes diagnosing your condition, determining your outlook, assessing your treatment options, and implementing an effective treatment plan for your condition. Your health care team can also help you face the financial burden of your diagnosis.

Between hospital stays, procedures, drugs, tests, and copays, leukemia treatment costs can quickly add up. Your doctor can help you prepare for what the future might look like, so you can plan ahead. You might consider asking the following questions:

  • Am I likely to need an at-home health care professional?
  • How long will my leukemia treatment last?
  • Are any of my treatments going to require prior authorization? If so, can you please help manage that?
  • Can you refer me to any financial assistance organizations?

There is no one-size-fits-all treatment regimen for leukemia. Your leukemia care should be tailored to meet your unique and shifting needs, including how your disease (and treatments) impact your quality of life. These quality-of-life concerns include paying for care. Your treatment team will want to take that into account during your treatment journey.

Understand Prior Authorization

Many doctors — or administrative staff members at your oncologist’s office — can tell you whether your insurance company requires prior authorization for your prescriptions. If they don’t know, or if you’d like confirmation, contact your insurance company. You can also check your plan’s drug list. If you see the abbreviation “PA” listed next to the drug your doctor prescribed, this likely means that prior authorization is required.

If the drug your doctor prescribes requires prior authorization by your insurance company to be eligible for coverage, you will need to provide:

  • Your name and contact information
  • Your specialist’s name and contact information
  • Information about the hospital or treatment center where you receive care
  • Whether your provider and treatment center are in network or out of network
  • The name of the drug you are requesting coverage for
  • Any additional information you would like your insurance provider to consider

In addition to the information you provide the insurance company, your doctor will be asked to share:

  • Your diagnosis and other relevant health conditions
  • Information about lab work, tests, and procedures you have undergone
  • The drugs you have already tried to treat your condition
  • A list of your medications, including prescriptions, over-the-counter medicines, and infusions
  • Any additional health services you receive, like treatment at an infusion center or home health visits
  • The rationale for the request, such as whether the prescribed drug is medically necessary

After you and your doctor have submitted this information to the insurance company, a medical specialist will review your application to make a determination. This person will also check the list of your other medications to ensure that your doctor’s prescription will not interact with these drugs, resulting in unwanted side effects.

Understand Your Insurance Plan’s Benefits

Health insurance plans vary widely when it comes to prescription drug coverage, premiums, eligibility, deductibles, coinsurance, and out-of-pocket costs. It’s critical that you understand your plan and its terms inside and out. Always read the fine print so you understand what your payment responsibilities will be, which hospitals and doctors are in your network, and whether your policies have any caps or limitations on payment.

Talk To a Financial Counselor

Many hospitals and medical centers have financial counselors who can help you find patient assistance programs (PAPs) — government or private programs that provide financial assistance. Some will even help you fill out applications for local and national programs. If you do not qualify for a PAP or are denied financial aid from a PAP, ask your doctor’s billing department if the hospital or center offers a payment plan. Many of these plans charge little to no interest.

Many hospitals, such as MD Anderson Cancer Center, have social workers or whole departments dedicated to helping people with insurance and financial matters. Some agencies even coordinate directly with insurance companies. Ask your doctor if your treatment facility has a resource like this.

Get Help With Drug Costs

If you can’t afford your leukemia treatment, your health — and prognosis (outlook) — may suffer. Understanding your insurance plan and prescription drug coverage details will help your physician prescribe medications that are covered by your insurance company. For medications not covered by your plan, your doctor can try to get a waiver for your specific medication. Your doctor can also help you control treatment costs by recommending generic versions of drugs, which are usually (but not always) cheaper than brand-name drugs.

Many pharmaceutical companies provide financial assistance to people who are being treated with specific medications. Some offer reimbursements, some have copay assistance programs, and some offer discount coupons. Cancer.Net compiles and regularly updates a spreadsheet of PAPs sponsored by drug companies.

In addition to government and private PAPs, many nonprofit programs can help people manage cancer drug costs. You may qualify to receive your leukemia medications for free or at a reduced cost. Your doctor can support your application for one of these programs by providing information about your condition and explaining your need for a specific leukemia medication.

Request a Referral

Sometimes your doctor or treating facility can’t meet your treatment needs at a price you can afford. Thankfully, there are more high-quality cancer care facilities, providers, and therapeutic options than ever before.

If your doctor or leukemia treatment center can’t meet you where you are financially, they should be able to refer you to other high-quality options, such as a federally qualified health center. Livestrong has a list of resources for people with financial needs.

The cost of cancer treatment and care is an important factor to discuss with your health care team and family. Your doctor can help you navigate this journey, just as they work with you to find the best ways to treat your leukemia.

You’re Not Alone

MyLeukemiaTeam is the social network for people with leukemia and their loved ones. Here, you can ask questions, share tips, and spark conversations with other people who understand life with leukemia.

Have you worked with your doctor to make your leukemia treatments more affordable? Share your thoughts in the comments, or start a conversation on your Activities page.

All updates must be accompanied by text or a picture.
Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Nyaka Mwanza has worked with large global health nonprofits focused on improving health outcomes for women and children. Learn more about her here.

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