Patient to Patient: Money Management Tips for Mast Cell Disease Patients

Written By: Alexandria Fiorenza Vale

Living with a chronic illness comes with a lot of medical expenses.

There are co-pays for office visits and medications, travel expenses in order to see specialists, and for some of us, hospital bills. The medical expenses never seem to stop coming.

Sometimes, it may seem that there’s not enough money available to pay off all of these bills. Most of the time, insurance doesn’t cover all of the medical expenses a chronic illness patient endures.

Anyone else dread opening the mailbox? Some days it seems like all the mail that comes in the mailbox is medical bills.

Here are some money management tips for you:

Create a Monthly Budget

Write down what your expected monthly medical costs are, include as many regularly occurring items as you 3. can think of. expected cost. For example:

  • Doctor Visits
  • Co-pays for medicines
  • Medicines that are not covered by insurance
  • Insurance coverage costs
  • Travel expenses for doctor visits
  • Your budget should also include all of the regular expenses you incur, including: groceries, utilities, mortgage/rent, car payment, phone bill, etc.
  • Make sure you also include your monthly income. This will help you know what money you have coming in every month and what money will be allotted for bills and then your medical expenses.

Having a budget can be life changing and will give you peace of mind. If there is money left over, include a budget category for savings and then consider putting it into an interest-bearing savings account.

If you are unable to handwrite your budget, there are apps that you can plug this information into that will calculate all of this for you. Make sure you research these apps to understand their features and costs. There are some free apps, but many require a subscription or charge a fee for premium features. NerdWallet has a ranking of some of these apps, but do your own research as well.

If you’re able to meet with a financial planner, now would be a good time to do so. They will be able to help guide you with not only your current financial situation but also for the future. It helps when you have money for a “rainy day.” Make sure to verify your chosen financial planners’ credentials.

Seek Out Medication Cost Savings

Medications may not always be covered by insurance and if they are, sometimes only a percentage of the cost will be covered.

One thing I’ve learned over the years is many manufacturers offer co-pay assistance for medications. TMS has a list of co-payment assistances programs for medications used to treat mast cell diseases. However, you may also have to call the manufacturer directly. This happened to me. There was a heart medicine that I had to take, and the insurance would not cover it. My doctor tried to help by submitting a prior authorization and even doing a peer-to-peer review with the insurance company. At that point, I had a choice to either spend $1000 a month for this medicine or not get the treatment I needed. I did some research and found the manufacturer. I called and explained the situation and they said they had a form that had to be filled out by me and my doctor. A few days later, I got an approval and it only cost $5 a month. Reaching out to the manufacturer helped not only my pocket, but also helped keep my heart rate under better control.

It is important to know what options are available to you. Some pharmacies have their own discount cards and there are also programs such as Good-Rx, that can help lower costs. Asking the pharmacist can be helpful as well. They are usually up to date on the newest discount options that are available to patients.

Check with your insurance carrier to see if they offer certain riders on their policies. I was able to get my EpiPen covered without a $300 co-pay as there was a guideline written in the policy that allowed for coverage since I had frequent anaphylactic reactions and could not be without an EpiPen.

Speak to your Doctor. Let them know what your financial burdens are. Sometimes they have medication samples in the office that they can give you. Other times, they can fight with your insurance company on your behalf and state how important it is for you to have a certain medicine.

Find a Doctor Who Accepts Your Insurance

One of the greatest hurdles for mast cell disease patients is finding a doctor who is knowledge in treating your disease properly. Often, the doctors you find may only accept certain insurances, be self-pay only or are located across the country.

Find an in-network doctor whom you trust and while they may not (yet) be an expert in mast cell disease, they show willingness to learn and help you.

Ask them to sign up for TMS’ Physician ECHO Program! After the completion of this course, they will be vetted by us, and you can trust them to have the tools, knowledge, and resources to create your best plan of care.
Review TMS’ physician list as well as consider physicians personally recommended by other patients! You can go onto TMS’ Inspire page, share your location, and other patients will be able to share their personal physician recommendations.

Seeking other types of financial support

Once you have done your budget, you may find that you don’t have adequate income to pay for regular expenses and the cost of your care. If you have attempted the cost saving measures listed above and you are still struggling, you may need to seek out financial assistance not related to your health care costs.

Here are some examples of places you can go for assistance:

  • The TMS patient assistance page lists some resources for help with paying for bills, housing needs, and travel assistance.
  • is a resource that can help you find out what support services are available in your area, such as township assistance, housing support, community or church service programs, and things like SNAP (Supplemental Nutrition Assistance Programs).
  • If your condition is making it difficult to work, you may need to apply for disability assistance. TMS has a resources to get you started.

As mast cell patients, we depend on access to care to improve our quality of life and on medications that can be lifesaving. Without them, we’d be in a lot more trouble than we already are. Medical expenses can be a burden and can take a toll on a person living with a chronic illness. Receiving care by a doctor when you often can’t find one who accepts insurance creates an even larger mountain to climb- fearing for your health and future. It is difficult to keep up with everything especially when you’re not feeling well.

Taking the steps outlined above can help ease the financial burden. I hope that some of these tips will help make your life with chronic illness a little more bearable. Remember, you’re not alone in this struggle.

Alexandria Fiorenza Vale is an MCAS patient who is committed to serving the mast cell disease community. She works in the financial services industry and gives back to the TMS community as a volunteer and support group leader. To learn more about Alexandria’s patient story, click here.

NOTE: This article is not to be considered as individual financial advice. This is general advice based on patient experience, and geared toward the mast cell disease community. It has been created to help guide you through your patient journey. For further help, please contact your own financial institution or a financial advisor.

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