The Real Monthly Costs of Heart Failure
Six people reveal how much they spend to treat their heart failure, and offer tested money-saving tips.
A heart failure diagnosis may come as a complete shock for some people, while for others, shortness of breath and swollen ankles — two common symptoms — are key giveaways.
Stacy Wright-Barleston, Bob Romer, Bob Oberfield
Heart failure occurs when the heart is unable to pump sufficient amounts of blood and oxygen throughout the body to support and nourish other organs. About 5.7 million people in the United States have the condition, according to the Centers for Disease Control and Prevention (CDC).
“Heart failure” sounds scary, and it’s definitely serious. But having the condition doesn’t mean the heart has stopped beating: Some people are able to successfully manage the condition with medication and lifestyle changes, such as by getting regular physical activity and modifying their diet. Others may need a heart transplant, which requires regular follow-ups and testing by a heart failure specialist, as well as additional medications to reduce the risk of organ rejection.
Timely, proper care for heart failure is critical. Early diagnosis and treatment can extend and improve your life. Real monthly out-of-pocket costs of heart failure drugs and supplements can range from $19 to $705. To cut costs, compare insurance plans and talk with your doctor about taking the lowest effective medication dose.
An April 2016 report in American Health & Drug Benefits found that the high costs of heart failure made up an estimated 23 percent of U.S. hospital inpatient costs in a single year. But as patients with the condition know, the cost of daily medications can add up substantially after they’re discharged, too.
These six people with heart failure share their experiences and disclose how much they spend on medication and supplements for their condition. They also explain which costs they have to handle on their own — even with insurance — and what they’ve learned along the way about how to reduce their heart failure-related expenses.
Stacy Wright-Barleston, 47, Patient Advocate Monthly Medication and Supplements: $86 Unassisted Costs: About $1,300 Insurance Premium: $0 (Previously $100)
Stacy Wright-Barleston of Cincinnati had a massive heart attack in 2013, and then learned that she has heart failure. But these days, thanks to effective medication and her attention to lifestyle, she’s doing well and managing her medication expenses.
Through an Ohio program she found out about, she was able to request that her health insurance premium be waived based on her income. That saved her $100 a month.
Her monthly out-of-pocket total for medication co-pays and supplements is $86. She currently takes Crestor (rosuvastatin), Cozaar (losartan), Entresto (sacubitril), Coreg (carvedilol), and Lasix (furosemide). With her doctor’s okay, she also takes garlic tablets, an omega-3 supplement, and coenzyme-Q10 — all of which she pays for out of pocket, because they aren’t covered by her insurance.
Because of her heart failure diagnosis, Wright-Barleston became an advocate for empowering other women who may have heart failure, which gives her great satisfaction. “I speak at various conferences and conventions,” she says, along with talks she gives to women’s groups and other gatherings, alerting people to the fact that heart failure isn’t just a man’s condition. She also hosts a Facebook page, Sisters of the Heart Network, to keep women informed about heart health.
WomenHeart, a national coalition, also offers help to women with cardiac issues.
Her best tips: About a month before open enrollment for insurance plans occurs in October, start looking around at the various options available, and be sure to check out the different plans even within the same insurance company, Wright-Barleston recommends; you could find that one provides more complete coverage for heart medications. “You want [a plan] that works best for you and your needs. See if they cover all your medicines,” she advises.
Mike Ashworth, 60, Soccer Coach, Retired Insurance Broker, Volunteer for Heart Brothers Monthly Medication and Supplements: $705 Unassisted Costs: $3,112 Insurance Premium: $750
Mike Ashworth earned his reputation as the Miracle Man — how doctors and nurses at Tufts University in Medford, Massachusetts, dubbed him once he successfully recovered from his heart transplant. The Warwick, Rhode Island, resident was first diagnosed with ischemic (dilated) cardiomyopathy with acute decompensated heart failure in 2003, yet it wasn’t until 2014, after a five-year wait on the transplant list, that he got a new heart. A lifelong athlete, Ashworth has returned to coaching soccer, his passion.
He must carefully adhere to his regimen, which requires him to take 29 different medications or supplements, including aspirin and multivitamins, prescriptions such as Pravachol (pravastatin) and Prinivil (lisinopril), and other medicines to manage kidney and liver problems. Without assistance, the drugs would cost him more than $3,100 a month.
With insurance, his out-of-pocket cost is $705 for medication co-pays, though his premium adds on another $750.
Besides soccer, Ashworth’s other passion is helping those who are facing what he faced. So he is a volunteer and advisory board member for the Heart Brothers Foundation, a nonprofit that helps make the road to recovery less stressful for heart failure patients and their families.
His best tips: “Push your doctors to reduce dosages as much as you can,” Ashworth says. The goal is to get the dose down to the lowest level that’s still effective, which can reduce both costs and side effects, he says.
Another tip from Ashworth is to search for co-pay cards for your specific brand-name drugs. Most pharmaceutical companies offer programs that will help pay for drugs, but they usually only last for a limited period of time, such as one year.
Cynthia Chauhan, 74, Retired Clinical Social Worker Monthly Medication and Supplements: $25 Unassisted Costs: $127 Insurance Premium: $678
Cynthia Chauhan of Wichita, Kansas, found out in 2014 that she has heart failure with preserved ejection fraction. “I have trouble breathing sometimes, and I end up in the ER,” she says of the visits that add to the cost of her medications. In case she develops chest pain again, she now never leaves home without her nitroglycerin.
Chauhan takes a variety of medicines, including Cartia XT (diltiazem) and Lasix, and also has a special heart monitor implanted in her pulmonary artery that takes readings via Bluetooth and then sends the data on to her doctor.
Formerly a social worker, Chauhan has good insurance coverage from her many years in practice. Although the premiums are expensive, at $678 monthly, the coverage is good. “If I use a generic, the co-pay is $5,” she says.
Chauhan pays attention to symptoms and closely follows her doctors’ instructions. For instance, she takes a diuretic each day, but if she gains more than three to five pounds — an indication that the condition is worsening — she switches to a stronger diuretic.
Her best tips: Check with your doctor to see if you can get prescriptions for lower-cost generic drugs rather than the more expensive brand-name medications, she says. Then shop around: Prices differ from pharmacy to pharmacy and online.
Take your drugs exactly as prescribed, Chauhan advises. “A lot of older people try to stretch their money, thinking they will take something every other day” — not a good idea, she always warns.
Bob Romer, 54, Cofounder of the Heart Brothers Foundation Monthly Medication and Supplements: $300 Unassisted Costs: About $1,600 Insurance Premium: $248
Bob Romer of Framingham, Massachusetts, was diagnosed with congestive heart failure at age 38. But it wasn’t until Valentine’s Day of 2013, when he was 51, that Romer received a heart transplant.
He’s doing well now, thanks to receiving good care and following his doctor’s orders. He takes six prescription medications, including the statin Prograf (tacrolimus) to prevent transplant rejection, a multivitamin, a magnesium supplement.
His out-of-pocket expenses are about $300 monthly. Without insurance coverage (he has Medicare and a supplemental plan), he says his unassisted costs for medications would be about $1,600 per month.
He met Patrick Sullivan, a fellow transplant survivor, while he was in the hospital. Together, the two decided to found, along with their wives, the Heart Brothers Foundation, to help patients and families of those going through a heart transplant survive financial and emotional stresses.
His best tips: Turn to drug companies for financial support. “The drug companies will support you, but not forever,” he says, referring to the numerous patient assistance programs offered by pharmaceutical firms. Depending on the program, you may end up paying only $5 or so for a very expensive drug. You can call drug companies directly, using their 800 numbers, or look up information on the company or specific drug website.
Patrick Sullivan, 61, Cofounder of the Heart Brothers Foundation Monthly Medication and Supplements: $350 Unassisted Costs: $2,000 Insurance Premium: About $325
Sullivan learned he had heart failure in 1993, when he was only 38. But it wasn’t until November 2012 that he got a heart transplant. Before the surgery, he spent an agonizing year in the hospital at Tufts Medical Center in Boston, where he met fellow transplant candidate Bob Romer.
The two made a pact: If they got out of this alive, they would give back. So in 2014, they formed the Heart Brothers Foundation. “We’ve helped hundreds and hundreds” in the form of financial help and moral support, says Sullivan. Now, they have a corps of volunteers who reach out to other patients and their families in similar situations.
These days, Sullivan takes 12 medicines a day, ranging from the anti-rejection drug Prograf to manage his heart transplant, to medicines for his high blood pressure and cholesterol, as well as a drug for neuropathy (nerve problems) linked to the anti-rejection medicine.
“It costs about $350 a month. I have Medicare plus a very good supplement plan,” he says. Without that insurance, his medication regimen would total about $2,000 monthly.
His best tips: Ask your doctor for details about why you need the drug that’s being prescribed, and get a clear answer, he says. Like others, he’s learned to ask for generic drugs, which are typically less expensive. But if your doctor vetoes generic, it’s important to listen: There might be a very good reason, he says, such as better effectiveness with a particular brand.
Bob Oberfield, 78, Semi-Retired Pharmacist Monthly Medication and Supplements: $19 Unassisted Costs: $6 Insurance Premium: $163
Bob Oberfield, a semi-retired pharmacist in Scottsdale, Arizona, was diagnosed with heart failure in 2006. Since then, he’s had bypass surgery and replacement of his heart’s mitral valve. He had a pacemaker-defibrillator implanted in 2009; when that one wasn’t working quite right, he had another implanted in 2014.
Oberfield takes six medications and supplements daily to help his heart, including Coreg, Aldactone (spironolactone), Lasix, and omega-3 supplements. Thanks to a Medicare plan and a supplement that helps cover medications, his out-of-pocket cost for medicines and supplements is $19 monthly. He pays about $163 per month for the insurance.
And he’s currently doing well: He’s president of the Scottsdale chapter of Mended Hearts, a nationwide cardiac support group, and regional director for the Rocky Mountain region of the organization.
His best tips: When your doctor prescribes a new drug that’s expensive, ask if there’s anything else you could use that might be less expensive. Also ask, “Do you have any coupons or ID cards available that I can take to my pharmacy?” But be aware that patient assistance programs have some restrictions, such as a time-limited price reduction.
Don’t overlook your pharmacist as a good source of information, and don’t be afraid to call a drug company directly. “There’s an 800 number for every pharmaceutical company,” Oberfield says. “Call them up and tell them your situation. Tell them you’d like to use their drug, and ask if there’s any way they can help you.”