By Rhonda E. Monroe, as told to Sarah Ludwig Rausch
I was diagnosed with heart failure (HF) 18 years ago, and I’ve been advocating for myself from the very beginning. It started with a week of emergency room and doctor office visits to convince the doctors that I was having a heart attack. A few months later, I was diagnosed with heart failure. Later, I held a press conference from my hospital bed when no one wanted to do the heart surgery I desperately needed. (It worked.)
Now, advocacy has become my life’s work. I’m on the advocacy committee for the Heart Failure Society of America (HFSA), and I’ve launched my own niche advocacy organization called BOOST (Better Outcomes Optimal Scientific Therapies). As a former economist and research analyst, BOOST has given me the chance to combine my educational background with my passion.
Heart failure is a chronic condition, which means the treatment is ongoing – and so are the expenses. If you or a loved one has been recently diagnosed, it’s helpful to know what sorts of costs may come up.
Medication: At a minimum, you’ll have medication expenses. You’ll be prescribed one or more of the drugs that are considered “guideline-directed medical therapies” in the current guidelines for managing HF. This could include beta-blockers, ACE inhibitors, angiotensin II receptor blockers, SGLT2 inhibitors, or MRAs. It often includes other treatments such as diuretics (water pills) and oxygen, too.
Hospital bills: Unfortunately, HF is usually diagnosed in the hospital, so hospital bills are often a major expense. This could include an ambulance bill, too. If you have more serious HF, you may need a device such as a ventricular assist device (VAD) or even a professional caregiver.
There can be surprising expenses that come up, as well. For example:
Occupational therapy: Some people with HF have a hard time cooking and bathing themselves. You may need occupational therapy to help you set up your house so you can take care of yourself more easily.
Lifestyle changes: You’ll need to make some adjustments to your lifestyle, such as eating a healthy diet and getting active. Healthier eating choices are more expensive than picking up a fast food burger. Cardiac rehabilitation – a program that involves physical activity and education – is another possible expense. Even if your insurance pays for it, you may have to pay a copay every time you go in.
Household items: One of the struggles with heart failure is congestion. You’ll probably need to sleep on more pillows or get an adjustable bed so your head is elevated. After surgery, you might need a shower chair.
Mental health costs: Many people with HF get depression. You may need to see a mental health professional for therapy or medication.
Of course, your expenses will depend on your situation. For instance, where you live affects things like your insurance premiums, grocery expenses, gasoline costs to clinic visits, and copays. If you have other conditions on top of HF, your medical expenses are often higher. And if you live in a rural area, you may have to travel a long distance for your care.
Finding Financial Help
If you’re uninsured, underinsured, or you don’t qualify for Medicaid or other government assistance, there are ways to get financial help.
- Many pharmaceutical companies will send your medicine for free. Check the company website for an application to see whether you qualify.
- Many hospitals have charity care programs. If you qualify, they’ll reduce your bill or even pay it. They may be able to point you to other programs that can help, too.
- Some nonprofit foundations offer financial assistance, such as HealthWell Foundation, NeedyMeds, and Pan Foundation.
Working With Your Insurance Provider
You should be able to rely on your insurance coverage to pay for guideline-directed medical therapies and the standard of care to treat your disease. If your disease is complicated or you have other conditions, ask your insurance company for a case manager. This person can help guide you as you manage your care.
It’s important to be honest with your insurance provider about your health issues and concerns. When you get an explanation of benefits from them, follow up on it. It’s also helpful to have a relationship with a claims representative you can contact when you need them.
Advocate for Yourself
Here are my tips on how to become an informed partner in your HF care:
- Educate yourself to understand your diagnosis and treatment options.
- Keep a list of your questions and concerns and take them to your appointments.
- Communicate clearly and openly with your health care team to decide the best options for your care.
- Take your medications as prescribed and make healthy choices.
- Join a patient and caregiver community to get support and information.
Photo Credit: katleho Seisa / Getty Images
Rhonda E. Monroe, MBA, founder and CEO, BOOST; member, Heart Failure Society of America Advocacy Committee.
The American Journal of Managed Care: “Key Takeaways from the 2022 ACC/AHA/HFSA Guideline for the Management of Heart Failure.”
HeartFailureMatters.org: “Aldosterone Receptor Antagonists or Mineralocorticoid Receptor Antagonist (Mras) (MRAS).”
Mayo Clinic: “Ventricular assist device (VAD).”
CDC: “How Cardiac Rehabilitation Can Help Heal Your Heart.”
Heart Failure Society of America: “Additional Resources: Patient Assistance Programs.”