Navigating finances with myelofibrosis

Financial guidance specifically for MF from a cancer rights attorney.


Monica Fawzy Bryant,

Living with a disease like myelofibrosis means living with lots of unforeseen and potentially unwieldy costs. But the more you know about what to expect, the more equipped you’ll be to handle them. Plus, for some expenses, help is out there, you just need to know where to look.

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Medical bills

What is covered and what’s not? Second opinions? Clinical trials? Are your MF specialists in-network?

Doctor visits, tests, and prescriptions are costs you can probably see coming. You’ve likely dealt with them in one way or another throughout your life. Living with myelofibrosis, you’re just going to see more of them. Plus, you may have to account for additional medical expenses including visits to specialists, durable medical equipment like a cane or scooter, second opinions, and experimental treatments.

With myelofibrosis, you have to account for expenses like specialists, durable medical equipment, second opinions, and experimental treatments.

Health insurance is a key part of financial plannings, says Monica Fawzy Bryant, cancer rights attorney and co-founder of the non profit organization Triage Cancer. This is especially true if you have a serious medical diagnosis. Make sure you study and understand your policy, while asking for assistance to help navigate through it.

“What we find a lot is that people may have a policy through work, but until they get a serious medical diagnosis, they never really have to understand the ins and outs of billing and what they can do if they get a denial,” said Bryant. Whether or not your policy is through your employer, a serious diagnosis like MF means taking a closer look at your coverage and asking specific questions. What is covered and what’s not? Second opinions? Clinical trials? Are your MF specialists in-network? And, if you haven’t already, get in the habit of discussing costs with your health care team before treatment.

Contact Triage Cancer for help deciding on an insurance provider.

If you are in the process of looking for insurance, Triage Cancer can help you identify options. Depending on your household’s size and income level, you may qualify for Medicaid, a state-run health insurance program. If you’re over 65 or have been receiving Social Security disability insurance for two years, you may be eligible for Medicare, the federal health insurance program. Beyond that, you can look in your state health insurance marketplace, which you can find at While it was created by the Affordable Care Act, it is not government insurance, but plans from private companies that may have additional benefits like financial assistance and quality controls.


Non-medical bills

So many people are there to help you. You just have to ask.

Unfortunately, the financial challenges of living with MF aren’t just the medical costs. Depending on where your doctor is located, you may need to consider travel expenses like planes, trains, ride-hailing services, hotels, and food. Consider non-medical therapies, too, like massage and acupuncture, and any extra help you might need around the house, like cooking, cleaning, laundry, or yard work.

The American Cancer Society can help pay for non-medical bills and provide grants.

The good news is that for many of these costs, help is out there. Gail, who has lived with MF for more than 10 years, has found a number of organizations to help. “The American Cancer Society is a big help in many ways, helping pay for things, getting some grants,” she said.

“When I was in the hospital in Philadelphia, the Bone Marrow & Cancer Foundation gave us a really nice place to stay and paid for the whole thing. And then we were getting free Uber rides too through another organization.” During one visit to a doctor in New York City, Linda was able to stay for free at Hope Lodge. Run by the American Cancer Society, more than 30 cities offer this home away from home for people facing cancer and their caregivers.

Linda also found support outside of health organizations. “I reached out to my credit union, and they were so helpful. They just helped me with some of my payments.” In addition to medical and financial institutions, consider local organizations that may be able to offer aid—community-based, spiritual, even local charities, schools, or sports teams that can work with you to raise money through events, sales, or even crowdfunding.

Talking with a social worker at your hospital is a good place to start.

Linda explained that help is there, but you have to look and ask around, suggesting the social worker at your hospital as a good place to start. “There’s so much in the beginning that you’re not sure of. And I was so worried about paying for all my medical bills and then paying for all this. Now we feel very secure knowing that we’re getting help. So many people are there to help you. You just have to know to ask.”


Other financial factors

The financial implications of a disease like myelofibrosis are far-reaching. But the more you can be aware of, and possibly plan for them, the more you can focus on your health.

Legal documents

Bryant recommends that everyone over the age of 18 have three documents in place:

Working with a legal professional can lighten the burden on you and your loved ones.

  1. A will, which deals with the distribution of property upon death.

  2. A power of attorney for financial affairs, which lets you name someone to make financial decisions if you’re unable to, including applying for financial assistance.

  3. An advance healthcare directive, often called a living will, which documents your wishes for your medical care, should you be unable to express them.

Some of these documents are inexpensive or even free, but whether you go that route or work with a legal professional, these documents will reduce the burden on you and your loved ones, once they are complete.


If you are currently working and dependent on that income, it’s important to consider the ramifications should you have to take leave from your job to deal with MF. Talk to your employer and make sure you understand the paid and unpaid-leave policies. Can coworkers donate paid time off to you if you need it? Can your employer be flexible about your work schedule? Familiarize yourself with the Family and Medical Leave Act (FMLA), which guarantees that eligible employees can maintain their health insurance benefits while out on leave.

In the same way that your MF is unique to you, so are all the financial implications and resources.

Ultimately, there is no single answer or one-size-fits-all solution for financial planning when you’re living with myelofibrosis. No one way to save or budget money, no silver-bullet insurance policy or charitable organization. In the same way that your MF is unique to you, so are all the financial implications and resources.

When you’re feeling overwhelmed, think about what you can control. Be organized with your budget, expenses, and any potential financial tools or support. Keep looking for opportunities for help—you never know where you might find financial aid. And utilize free services and support with organizations like Triage Cancer.

Living with a disease like myelofibrosis means living with lots of unforeseen and potentially unwieldy costs.

[This interview has been edited and condensed for clarity.]