Buying Health

Buying Health

There’s a lot of talk these days about health care reform and making sure the uninsured have coverage.  I don’t want to debate the strengths and weaknesses of the law but I do want to comment about the struggles associated with having a chronic health condition and how much is not considered when adding up the cost.

Fortunately, most of Lynn’s prescription costs are covered.  If we didn’t have insurance, our cost would be over $5,000 per month for just his MS drug.  In addition to his MS medication, he takes meds for other conditions like high blood pressure, mitral value prolapse, neurogenic bladder, MS depression, hypothyroidism, and others.  Just the cost of meds alone would send us into bankruptcy or more likely, we just couldn’t afford for him to take anything if we didn’t have insurance coverage.  Total cost for his meds last year (insurance + copay) was $58,000!

Besides medication, his dietician has him on numerous dietary supplements to support neurological cell regeneration and to assist with energy and autoimmune responses. We spent $6,500 for those last year. That does not include the fact that most of what I buy for him now is organic or meats that have been grass fed.  Don’t know if you’ve checked out the price of organic food lately but it’s not cheap.  Grass fed meats and pastured poultry is also much more expensive than buying the store brand. We have discovered that his body does not eliminate harmful chemicals ingested or absorbed and that he’s been storing them up for years.  We are working now to get rid of all those toxins so the last thing I want to do is put more in there from fertilizers, hormones, or other chemicals used to buff up the animals or prolong storage and/or appearance.

Totaling our cost continues:  food and medications–covered; now for supplies.

Each month, I order medical supplies (self-catheters, in-dwelling catheters, gloves, lubricants, catheter insertion kits for travel, etc., skin care and barriers, lotions and ointments for various needs, and miscellaneous other supplies particular to his care.  I have shelves in an unused room full of such daily used supplies as well as other “in case of” supplies.

All of the above are the routine costs of daily living, but there are other more costly purchases which fortunately do not occur every day but when they do happen, they really take a toll on the purse strings.  For example, at various times we have purchased a cane, rollator, manual wheelchair, bedside commode, shower chair, and power wheelchair.   We were fortunate beyond words to have our church donate the cost of putting in a ramp so Lynn could get into and out of our house and a roll-in shower to make it easier to bath him.  Our house is a rancher so we have not had to decide between moving, putting in an elevator, or redoing a lower level to make accessibility available inside the house. Others, I know, have not been as fortunate.

One of our most expensive purchases was a conversion van–a Chevy Outlander that was converted so that an electric ramp would lower to allow wheelchair access. The passenger seat is removable to allow Lynn’s wheelchair to be upfront next to me as I drive.  The van was significantly more expensive than the typical Outlander and there is no discount for buying a vehicle that is designed for use by the disabled.

One expense I have so far avoided is paying a caregiver.  I’m fortunate to be able to work from home and friends or family stay with Lynn when I need to be gone for several hours.  I know, however, that the day will come when I’ll need to pay for care for him and where that money will come from, I don’t know because that expense is not covered by insurance. I don’t want to even think about how much that will cost.

My purpose for listing all the above expenses is to show that having a disability is not cheap!  Lynn receives just under $24000 from Social Security per year—that’s not enough to cover the cost of his medications.  I sometimes hear people comment about how nice it is that Social Security is provided and it is, but it falls far short of the amount of money needed to truly take care of someone who cannot care for themselves.  As I mentioned before, we are very fortunate that we have the support of our church family who do so much for us.  We are blessed beyond what words can express by their generosity; plus our families have helped out as they can.  However, I know that not everyone is as fortunate as we are and therefore, many with MS must go without the care they need or the medications that could perhaps slow the progression of their disease.  How unfair that seems to know that a person’s ability to improve or have a chance to survive is all based on how much he/she can afford.

So when I hear about healthcare reform, I know the current law is a long way from what is needed to benefit those with chronic conditions.  There is much that needs to be reformed about insurance and other benefits to support those who are disabled, and I know that many are working toward that end.  But one thing I do know for sure, I am fortunate to have insurance and thankful for every dime they have paid on our behalf because I know for a fact, without it, Lynn very likely would not be here today.

 

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Comments

View Comments (15)
  • Betty
    5 years ago

    I’m finding Medicare, the supplement, and Plan D drug plans leave much to be desired. One medication, Nuvigil, is no longer covered which is $1,600+ a month. As a retired teacher, I do not have buckets of money. It seems the pharmaceutical companies and government dictate patient care rather than physicians. Something is very wrong with this system. I selected this particular plan because the company would cover all of my prescriptions to some extent. Drug companies can change what they will and will not cover during the year. I, naively, assumed that a company would honor is commitment for the year.

  • Donna Steigleder moderator author
    5 years ago

    I agree. Health Insurance seems to work well for those who don’t need it but for those with significant health care needs that are very expensive, it leaves much to be desired. However, on the other hand money is limited and receiving some assistance is better than none at all. I can’t imagine how we would cope if we didn’t have health care at all.

  • Carol
    5 years ago

    Having MS has definitely changed my husband’s and my financial status. I had worked my whole adult life and to not be able to work at the age of 46 was a huge blow to our financial stability. Secondly, going from very little health care costs per year, to outrageous medical bills just added insult to injury. Yes, we have good health care but the monthly premiums are high, co-pays are high and the “out of pocket” costs are quite high as well. My only support person is my husband, as all of our friends and family live in another state. I am ambulatory and able to do many tasks; however, there are many things I need help with or I can no longer do.

    The cost of health care must be addressed in the Affordable Care Act (ACA). I think this new law is a step in the right direction but Congress now needs to work on the “Affordable” part. Americans pay the highest cost for prescription medication and most Americans are aware that Big Pharma’s lobbying is so powerful that many members of Congress vote the way Big Pharma wants them to vote. Americans also pay the highest costs for hospitalization. I read some information the other day, that a basic IV bag of saline solution was well over $100.00 in a hospital and the actual cost of this bag is a few dollars.Ridiculous. I am glad that the ACA is now law and I look forward to positive changes and an evolving law that will greatly help millions of Americans. Now, we need members of Congress to remember why they ran for office, so they can start working together to make the law stronger for the American people.

  • Donna Steigleder moderator author
    5 years ago

    I hope ACA helps but I think there is still much to be done. Having been employed in healthcare for over 30 years, I know the cost of that $100 bottle of saline includes not only the bag but the sterilization process, the pharmacist who filled the order, the pharmacy technician who delivered the order, the documentation trail that is huge for any medication process, and so much more. It’s a very complex system and I hope that as it is being debated in the years ahead, better processes will be developed. I’m not sure the ACA will make much difference but maybe it’s a start.

  • muse77
    5 years ago

    BTW, I’m not always long-winded! And I’m glad I found this site!

  • muse77
    5 years ago

    I appreciate your article. You are “lucky” indeed to have a support network to help, and to have the insurance you have. I’m 61, and my Social Security disability is only $483/month. Most of the work I did for years didn’t pay into Social Security. I’m on private Disability, but in a little less than 4 years from now, I’ll be essentially destitute. I have no family or friends who even live where I do, much less being willing to care for me.

    But the point to all this, to me, is that the original objective of the ACA was to eliminate the need for health insurance almost completely by providing this country with universal health care for everyone, and before anyone jumps on their “that’s Socialist!” soapbox, I’ll tell you that I lived in the UK for 5 1/2 years and was not only well taken care of when I was ill, but was involved in studies that eventually became, for one, Tagamet for acid reflux when I had an ulcer. They tried it on me and we were all excited that we found a drug that worked. And unless you’ve lived in a country where two entities – the American Medical Association and the profit-based health insurance – are eliminated completely, you can’t see how terrific national healthcare is. Where would this country be without public education? It’s the same principal that universal healthcare for everyone is based on. But that original plan has been truncated and disarmed by a terribly fractured government.

    We Americans see ourselves as a nation of “rugged individuals” who distrust everyone, in particular the goverment, but for some reason trust these money-grabbing Health Insurance companies. We also trust the pharmaceutical companies who charge outrageous prices only in America because they CAN. And we lose out on what could be a healthier, more comfortable life, and a perception of ourselves as part of a larger entity called humanity, or “We the people.”

    You say your husband was diagnosed in 2006. If you don’t mind my asking, what kind of MS does he have? I’m in Relapsing/Remitting still, was also diagnosed in 2006, but had to stop working 1 1/2 years ago. My disease has progressed, definitely. But I gather your husband’s has moved more quickly. They now say they know I had MS in 1989 but it wasn’t diagnosed. At least the true onset of this disease didn’t bowl my life over until 1 1/2 years ago. But it doesn’t alleviate the fear of progression and being totally alone, and looking down the barrel of no income as I get older, and decreased Medicare coverage. I feel for all of us.

  • julie brush
    5 years ago

    I want to know how a single woman,with ms,whom was forced out of her job as a nurse….by her employer,not her md….and was awarded ssdi,can pay her monthly premium of 262 dollars….compliments of the aca. Im almost 2 months behind on my premium payment. I do not have family to help. I blew my retirement on living when i lost my job. Its a daily stressor. The worry of it,is worse than the ms! I have no choice but to try and get out of the “system” and get back to work or end up homeless. I actually saw a girl on the side of the road the other day,holding a sign that read ” i have multiple sclerosis,i lost my job,please help” my jaw dropped. Being a bit of sn activist,ranter,etc….I stopped and talked to her,took her picture and wrote the news a little ditty with her picture included. I could not believe my eyes

  • north-star
    5 years ago

    Well said, Avery 4048. Americans are self-sufficient, rugged individualists until disaster strikes. Then we’re part of a great nation that responds to disaster with donations, volunteers and coordinated responses from FEMA, the National Guard, Coast Guard, insurance companies and low cost bank loans.

    We with MS are in a similar situation. For some, MS goes from on again, off again, to disaster because we can’t work and can’t afford to purchase adaptive technologies. The ACA at least forces medical insurance companies to share the wealth (they’re banks, essentially). It doesn’t go far enough but it’s a start. Voting is still free– support legislators that “get it” when it comes to health care.

  • Donna Steigleder moderator author
    5 years ago

    There are many things about our healthcare system that could use fixing and I agree that health insurance itself is a big factor in the ills of the haves and have nots for health care. It will take much work and foresight to make progress in that arena. Thanks for sharing your story.

    I too think Lynn had MS long before he was diagnosed in 2006. He had relapsing/remitting at the time of his diagnosis and probably now has secondary progressive. He has not had an exacerbation in at least 2, maybe 3 years, but there for a while was progressively getting worse which is why the doctor thinks it’s now secondary progressive. He’s been pretty much steady though for the past year so we’re not sure if it really switched to secondary progressive or is still relapsing/remitting and his hospitalization caused his rapid decline.

    Best wishes

  • mario lobo
    5 years ago

    Donna,
    Thanks for the excellent post. Another hidden cost is “opportunity cost”, which, in the case of the person with MS, is the income he or she could have been earning were it not for his or her disability. Like you, I have a work situation that enables me to care for my wife and I have good health insurance, so many of her medical and drug expenses are covered. So we’re doing OK financially. Yet, every so often I wonder how much different our lives would be, economically, with two earners. Keep up the great, thoughtful, writing!
    Mario

  • Donna Steigleder moderator author
    5 years ago

    Absolutely agree. We were in the process of building a new home when Lynn’s condition got so bad he had to stop working on it and was hospitalized shortly after that. If we still had two incomes, we would have been able to finish that home which had been designed by him to accommodate possible mobility issues for the future. Now that partially built home sits unattended and forlorn and we adapt our home the best we can. Thanks for sharing your story, Mario.

  • Laura Kolaczkowski
    5 years ago

    Donna, You do such a good job of explaining the gap between the haves and have-nots with medical insurance, employment, and the importance of the good fortune of being connected with others who might also help. Like you, I continue to hope the changes we are seeing in our health care bystem might bring positive change for everyone. best to you and Lynn, Laura

  • Donna Steigleder moderator author
    5 years ago

    thanks Laura

  • Kim Dolce moderator
    5 years ago

    Donna,

    You mentioned that the MS drug would cost $5,000/month without insurance. Since drug companies offer patient assistance to those who are uninsured, are you saying that your household income would make you ineligible for assistance? And though having Medicare does disqualify us from those programs, charity orgs are picking up the tab. Just curious.

    I’m all too aware of the dearth of much-needed coverage for at-home care, among other things. So many people’s stories bring home the reality that friends and families, churches, and charity organizations are what determine one’s quality of life and level of disease management. We can only hope the health care system will see many more reforms.

    Thanks for writing another very informative piece.

    Kim

  • Donna Steigleder moderator author
    5 years ago

    Correct. I am fortunate that I have a well paying job and together, Lynn and I still have some money in savings (though not much) and some property that on paper, has value but in reality, would not sell for what we paid for it originally in this economy. Therefore, as our finances are currently, if my work insurance did not cover these drugs, we would not be able to afford them on our own While there are other organizations that do provide assistance and the drug companies themselves do offer income based assistance, my salary would likely disqualify us from those programs. That’s why having good health insurance that provides coverage for high-dollar drugs that are specific to conditions like MS and cancer is so essential.

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