Why I Am a ‘Million Dollar Baby’

Why I Am a ‘Million Dollar Baby’

“Good morning, Mrs. Cueva,” said the young lady on the phone. During our call, she informed me of a change in my medication coverage that would take effect in the following weeks. “Your copay will now be $830 per month instead of the usual $200,” she said. I’m not sure why the heck she thought this was in any way a “good” morning with the curveball she had just thrown me.

My morning turned into chaos and I went into freakout mode. Do they not realize that stress greatly impacts our health? This medication is only one of many that I take every day for my pulmonary hypertension (PH). My head spun as I thought, “Sure, let me go grab that off my money tree in the backyard.”

When discussing the challenges of living with a chronic illness, many neglect to mention the financial burden. For those of you who are unfamiliar with the medications used to treat PH, let me tell you that they are extremely expensive. And their prices continue to skyrocket.

Keep in mind that the above copay was my portion for one month. These medications are lifesaving. I need them to delay the progression of PH and to help combat some of my symptoms. Most PH patients are on dual or triple therapy. My husband jokes as he calls me his “Million Dollar Baby.” I wish that he was referring to Hilary Swank in her Oscar-winning role. You can imagine the amount of money we have disbursed on medications and other medical costs over the past 14-plus years.

Join the PH forums: an online community especially for patients with pulmonary hypertension.

We often hear about the daily physical and mental challenges those of us with a chronic illness deal with. The financial burdens involved in merely “surviving” by taking these medications each month often is understated. When I received my diagnosis in 2005, we were a two-income family and doing well financially. But a few emergency room visits and extended hospitalizations quickly depleted our savings.

My beloved Mustang GT was the first sacrifice that we made. I told my husband, “It’s just a car,” the day they came to pick it up. Our home was next to go. We had worked our butts off to buy our house for our little family. I reminded myself, “It’s just a house.” But inside, I was shattered. Yes, these were material things, but we had worked so hard to get them. I am grateful that we still have each other — that is the most important thing.

My Moma, which is what we call my mother, used to say, “You can build a home anywhere,” as we moved often throughout my childhood. I repeated the same words to my tween-age daughter. Later, thank God and my husband for working so hard, we were fortunate to be able to buy a new house. It is smaller and more economical, but it is my castle. My husband ensures that we have all we need and then some.

Many of us living with chronic illnesses struggle to pay our medical bills. According to a 2009 study, many of those who have battled an illness for any period of time are being left with large debts. Some are forgoing medical care because of difficulties meeting the rising costs. A recent report in the Los Angeles Times also looked at the huge burden placed on Americans by rising healthcare costs. It found that insured workers with a chronic health condition in their family were more likely than those without a chronic illness to postpone medical care, including tests and medications.

Congress needs to address as this problem that continues to affect more families every day.

I know that most of you live with PH or are affected by PH or other chronic illnesses. Please remember that you are not alone. Most pharmaceutical companies offer financial and copay assistance, though many families are unaware of these programs. I have also learned that my insurance case manager can help with negotiating medical bills.

If you need medical attention, please do not endanger yourself due to medical debts or an inability to pay. Your health is priceless.

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Note: Pulmonary Hypertension 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. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

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2 comments

  1. Mike Porcaro says:

    Jen,

    I just had a similar experience when I received a letter stating I have reached the $1 million dollar lifetime max on my plan and my medical and prescription coverage was ending. While I was working, there was no lifetime max. When I went on disability and then retired, it took only two years to reach that threshold.
    I was shocked like you were. It does cause unnecessary stress and sleepless nights. The culprit for me is the cost of prescription drugs. $51,000 for a 90 day supply of Revatio. $15,600 for a 26 day supply of Remodulin. $10,600 for a 30 day supply of Opsumit. Outrageous!!
    Fortunately for me, my company is raising the lifetime limit for retirees to $5 million dollars next year. On appeal, they moved me to that limit now and reinstated my benefits before they expired. Even at that new maximum, I will reach the $5 million before I turn 65.
    Two months of phone calls, letters, pleadings and a letter from my doctor helped win the appeal. I was thinking, “what do people who are feeling worse than I feel do?What happens to people who get intimidated by authoritiies or don’t have the will and energy to fight?” I agree that something needs to be done.

    • Jen Cueva says:

      Mike, I am so sorry to hear of your struggles with the high medical costs. It is not fun and can be time-consuming to find some assistance. It sounds like your hard work and determination paid off for you. That’s great!

      I am glad that you enjoyed the column and hope that others will read it and learn from it as well. You are correct, so many are left in the dark and never find any assistance. It can easily become a full-time job just advocating for oneself, with PH.

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