Living with Pompe disease or caring for a child with a rare disease like Pompe calls for careful financial planning. While the costs associated with treating the disease may be daunting, understanding your financial management options can help.
Financial planning may involve taking into account your healthcare needs, treatment, medical bills, and other expenses balanced against your sources of income.
The cost of Pompe disease
Medical-related expenses for Pompe disease are likely to be the greatest cost. It can include everything from enzyme replacement therapy (ERT) and other medications to medical specialist visits, hospitalizations, healthcare aides, and adaptive devices such as power wheelchairs.
Pompe disease is a rare genetic disorder caused by a toxic buildup of the sugar molecule glycogen inside cells, which primarily affects muscle cells. Symptoms include muscle weakness that leads to problems with mobility, breathing, eating, hearing, and the heart.
The cost of treating Pompe disease per year varies for each situation based on factors like your circumstances, treatment options, insurance coverage, and changing healthcare costs.
Planning your financial future
Forward-looking planning requires taking stock of your current and likely future financial situation, says Martin Shenkman, an attorney in private practice in New Jersey.
Shenkman has published and lectured extensively on planning for chronic illness and educates professional advisers about planning for clients with chronic illness and disability.
“Your financial picture will be a snapshot of your sources of income, balanced against your current expenses, and potential future expenses as a result of Pompe,” Shenkman says. “Cash flow sources may include employment and investments, while expenses may include health insurance premiums, medical expenses, and building a rainy day fund for emergencies.”
According to Shenkman, a financial adviser can help you do regular checks to assess any changes in your medical needs, treatment costs, insurance coverage, and income, They can also help you adjust your budget and financial goals as needed based on your health.
Additionally, you should look into other aspects of planning when living with a chronic illness, such as preparing a financial power of attorney and setting up a healthcare proxy.
Your child’s financial future
As a guardian or parent of a child living with Pompe, you may want to consider setting up a special-needs trust to manage financial assets and provide for their future needs while preserving eligibility for government benefits.
A special-needs trust can often be a supplement to government benefits like Medicaid and Supplemental Security Income (SSI) and other sources of financial support for your child. These social programs have strict income and asset limits, but funds held in a special trust account are usually not counted as resources for eligibility purposes.
Consult an attorney experienced in special-needs planning to create a trust that meets your child’s specific requirements and ensures their long-term financial security.
“The objectivity the adviser brings to your planning can be invaluable,” Shenkman says. “It is often difficult for a parent struggling with a child’s health issues to have an objective perspective on their finances.”
You may also want to consider further protecting your child’s future by naming a guardian who understands the child’s health status.
“Importantly, if you are providing care for your child living with Pompe, what happens if you fall ill? How will the services you provide be replaced and by whom?” Shenkman says. “Not addressing a parent/caregiver’s disability is one of the more common gaps in this type of planning.”
Health insurance
Health insurance can help with Pompe disease treatment cost, including doctor’s office visits, hospitalization, medical supplies and services, assistive devices, and prescription drugs such as ERT.
Health insurance may be through the government (Medicaid or Medicare), an employer-sponsored plan, or private health insurance purchased directly from insurance companies, including through the Health Insurance Marketplace in the U.S.
“If you need help qualifying for Medicare or SSI, consult with an attorney who specializes in these matters,” Shenkman says.
There are different types of coverage offered by health insurance plans, such as hospitalization, emergency services, specialist visits, and mental health services.
Some of the specific benefits and limitations of your health insurance plan may affect the amount of coverage for:
specialist medical care from experts such as geneticists, metabolic specialists, pulmonologists, and cardiologists
preventive care such as physical therapy, occupational therapy, and speech therapy
prescription drugs, including ERT
laboratory tests or diagnostic procedures
mobility aids, respiratory equipment, orthotic devices, and durable medical equipment.
The Health Insurance Marketplace can help you find an insurance provider, get the right coverage, and tell you more about the Affordable Care Act.
State-based health insurance marketplaces may have their own directories or resources for locating assistance.
If you want to start or change a health insurance plan, you can also try asking for recommendations from:
your Pompe healthcare team, including a healthcare provider, social worker, or patient advocate
other people living with or caring for someone with Pompe.
Assistance programs
Many pharmaceutical companies offer patient assistance programs to help you afford your prescribed Pompe treatments, such as enzyme replacement therapy cost.
Ask your healthcare provider about medication assistance programs, check with patient advocacy organizations or support groups dedicated to Pompe disease, or check the websites of pharmaceutical companies that manufacture medications for treating Pompe disease.
These programs may provide financial assistance, co-pay support, or free medication to eligible patients who meet specific criteria, such as income level or insurance coverage.
Participation in clinical trials or research studies for Pompe disease can be another way to gain access to experimental treatments or therapies at reduced or no cost. Additionally, some research programs provide financial compensation or reimbursements for travel and other expenses incurred during study participation.
To be enrolled in a clinical trial or research study, you must meet the specific eligibility requirements of each particular trial. Patient advocacy organizations for Pompe disease can provide information and assistance to those interested in participating in clinical trials.
Nonprofit organizations dedicated to Pompe disease may offer financial assistance programs to support you in getting necessary medical care and treatments. These organizations may provide grants, scholarships, or financial aid to help cover medical expenses, insurance premiums, travel costs, or other related expenses.
A number of funds and copay relief programs may be able to assist with healthcare, including:
Many Pompe disease support groups organize educational workshops and webinars on topics related to managing the condition, including financial planning, health insurance, and disability benefits.
Shenkman notes that while there is a wealth of information online from financial firms, you should always be cautious, because these sources may not understand the nuances of your situation.
“State laws differ considerably,” he says. “Also, if you have any material financial assets, much of the information prepared for those with health challenges won’t address your needs, which are different.”
State assistance programs
Depending on your country of residence, government assistance programs may be available.
Eligibility criteria and available benefits for state-specific programs vary by location, so start by visiting the official website of your state’s government.
Look for social or disability services that have information about eligibility requirements, the application process, and available benefits.
If you are unsure about how to best navigate the disability benefits system, contact a legal aid organization or disability advocacy group in your state.
Your healthcare provider, social worker, or patient advocate may also be able to provide guidance.
Community assistance
Another option for help with healthcare costs is by reaching out to your local community, friends, and family members for support through fundraising events, crowdfunding campaigns, and charitable donations.
Crowdfunding for Pompe disease involves raising funds through online platforms such as GoFundMe and Kickstarter. News about your crowdfunding campaign can be shared through your social networks. People often post updates, photos, and videos on their campaign page to show how the funds are being used and the positive impact they are having.
Community fundraisers can help offset medical expenses, equipment costs, and other financial burdens associated with managing Pompe disease.
Fundraising events may include activities such as bake sales, car washes, charity auctions, benefit concerts, dinners, or other community-based initiatives.
Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
