Treatment advances for chronic lymphocytic leukemia (CLL) have increased the potential for better CLL management and improved quality of life.

These newer treatments can come with a significant financial cost, though. Since the average age of CLL diagnosis is 70 years old, many people learn they have the condition just as their income and working life are changing in retirement.

However, people living with CLL have many ways to reduce costs. Beyond government programs like Medicare and private insurance, nonprofit agencies and drug manufacturers offer support and subsidies.

Medicare covers many medical expenses for people over age 65. Some services you may have during your CLL treatment may be covered by Medicare.

Medicare Part A covers:

  • inpatient hospital stays
  • inpatient cancer treatments
  • some home healthcare

Medicare Part B covers:

  • doctor’s visits
  • diagnostic tests, such as CT scans and X-rays
  • some chemotherapy administered through a vein
  • some chemotherapy taken by mouth

Medicare Part D covers:

  • oral chemotherapy drugs
  • anti-nausea medications
  • pain medication

You may need other services that Medicare won’t always cover. The program may also have coverage limits on some treatments.

For example, your doctor may recommend more frequent blood testing during the watch-and-wait period of CLL treatment than Medicare will pay for. You may also have to cover deductibles and copays, which come out of pocket.

Social Security Disability Insurance (SSDI) recognizes CLL as a disability. However, you need to meet the SSDI criteria to get income-replacement benefits under this program.

Under SSDI, you can receive cash payments if CLL stops you from working for a year or more. Payments usually start on the sixth month of the year and keep going as long as you can’t work. If you reach retirement age while on SSDI, these benefits turn into retirement benefits for the same amount of money.

You may also be able to continue working while on SSDI under some programs.

Supplemental Security Income (SSI) is a monthly cash benefit to people under age 65 with a disability or over age 65 who have limited income and resources.

Medicaid pays for some medical services for low income adults who qualify. What’s covered and who can get Medicaid depends on the state you live in. You can apply through your state Medicaid agency or as part of your Marketplace application for health insurance.

You have many rights as a holder of health insurance. An insurer cannot refuse to cover you or charge you more because of a preexisting condition such as CLL or other types of cancer, unless you have a plan you purchased before the Affordable Care Act became law. Your plan also shouldn’t have yearly or lifetime dollar limits on coverage.

Nonetheless, your health insurance comes with limitations. The Leukemia and Lymphoma Society (LLS) recommends taking these proactive steps to make the most of insurance:

  • understanding your coverage by reading all documents in your policy
  • requesting a case manager to handle all of your claims and answer policy questions
  • paying premiums on time and filling out paperwork as requested
  • requesting preauthorization for services when necessary
  • keeping track of unreimbursed expenses to claim on taxes
  • staying organized with receipts and healthcare expenses

Review denied claims

If your health insurance does not cover an expense, do your best to find out why. It may be a mistake or a gray area in your policy. For example, your insurer may think a certain CLL treatment is not medically necessary, even if your doctor thinks it is.

You can appeal denied insurance claims. You can do this directly with your insurer. The information on how to appeal a claim should be on your policy documents, or you can call the company directly and ask them.

Sometimes people get bills directly from their healthcare professionals, and these may be more than they can pay. If you have this experience, you have a few options, according to the Consumer Financial Protection Bureau.

You can take these steps on your own or with help from an advocate. The LLS, for example, has partnered with an external organization to help people get rid of medical debt. You can get more information on the LLS website.

Check the charges

Make sure the charges on your bill are accurate. They should not include anything billed to your insurance company.

Also check out-of-network charges. You cannot get any “surprise” medical bills, such as for out-of-network expenses for emergencies, due to the No Surprises Act effective January 1, 2022.

Contact the healthcare professional if you don’t think you should have to pay for what’s on your bill.

Ask about financial assistance programs

Hospitals, particularly nonprofit hospitals, offer “charity care” to those who need financial help. The costs may be free or discounted.

Inquire about an interest-free repayment plan

Your healthcare facility or professional may negotiate a payment plan with you. Ask if you can have a payment plan that charges little or no interest.

Negotiate a lower fee

In some cases, the healthcare professional or someone collecting on their behalf may agree to a lower amount to satisfy the bill. Ask if you can negotiate your amount owed to something you can afford.

Many new CLL medications are helping people manage the condition better. These new drugs can come at a high cost. Several drug manufacturers offer free or discounted medications to uninsured or underinsured people.

To see if your CLL treatments might qualify for a drug manufacturer subsidy, visit Four of the CLL drugs with subsidy programs in place are:

  • acalabrutinib (Calquence)
  • ibrutinib (Imbruvica)
  • idelalisib (Zydelig)
  • venetoclax (Venclexta)

You can also ask your doctor about other resources to help pay for your CLL treatment.

There are other resources to help you manage the costs of living with CLL.

The LLS’s Co-Pay Assistance Program covers medical insurance premiums, copays, deductibles, and prescriptions for people with CLL. This program requires an application and accepts only a certain number of people at a time.

The LLS has information specialists on hand to help people learn about financial resources and options for those living with CLL. The number is 800-955-4572.

Another nonprofit organization, the Patient Advocacy Foundation, offers financial aid and copay relief to people with chronic conditions considered “debilitating,” such as CLL.

In addition, you can work with your care team, such as your oncologists, to talk with drug manufacturers directly about rebates or assistance programs for your prescribed cancer treatment.

Cost of treatment may be a barrier for people living with a diagnosis of CLL. Newer drugs may improve quality of life but come with significant costs.

Medicare, Medicaid, Social Security, and private insurance may offer some coverage or income support.

Drug companies offer subsidies to those who qualify and nonprofits have funding programs available to help people access the treatment they need.