It takes a village

Posted by on Jan 27, 2015 in Cancer Care, Family & Disease, Life & Health | 22 comments

It takes a village

 

Short-of-breath, weak, in pain.  Cancer; aggressive, cold, unfair, ravaged Roger’s body.  But maybe, just perhaps, there was a modern medical miracle.  A drug.  A single daily pill to attack the genetic growth switch in each malignant cell.  Only, there was a problem.  Not a big problem, really, but possibly fatal.  The kind of real life annoyance of living in a modern medical miracle society.  The co-pay cost to Roger was $3167… every month.

Short-of-breath, weak, in pain.  Cancer; aggressive, cold, unfair, ravaged Roger’s body.  But maybe, just perhaps, there was a modern medical miracle.  A drug.  A single daily pill to attack the genetic growth switch in each malignant cell.  Only, there was a problem.  Not a big problem, really, but possibly fatal.  The kind of real life annoyance of living in a modern medical miracle society.  The co-pay cost to Roger was $3167… every month.

Just dollars, you say?   Roger was on disability and had drained his savings on surgeons, oncologists, radiologists and food.  Also, he was hospitalized.  With pneumonia.  In an intensive care unit.  Bedridden.  Connected to monitors, IVs and oxygen.  And, alone; he had no family support.

Roger could not fight with the insurance company (who was unwilling even to consider payment for their part of the cost, while he was in the hospital), beg friends for cash, or go to the drug store to pick up pills.  The coup-de-gras?  The total cost of the drugs was so high that the hospital did not have it on their formulary.  Over $12,000 a month was too expensive for the hospital to afford.

It started with one of my partners.  He discussed the case with one of our nurses.  She was upset.  She mentioned the situation to a patient of ours, who had the same cancer.  Not with any goal, mind you, just “well, you are so lucky that the modern miracle medicine you are taking is working …” That patient became upset, too.

So, he gave the nurse five pills … enough for five days.  He called a friend, who had the same disease, who had taken the miracle medicine a couple months ago.  He donated the 11 pills left over in his bedside drawer.

And so on.  A support group heard about the case.  They donated eight pills. And so on. Six from Sam.  Ellen, two.  Ron seven pills … or was it nine? And so on.  Within days, there at the bedside, in the bottle labeled  “donations,” was a modern medical gift.  47 pills from strangers.   None of them knew Roger.  They would never meet. However, they knew the disease.  They knew fear.  They knew suffering.  They knew about hope.

I believe in pharmaceutical chemistry and astonishing advances in molecular medicine and genetic science.  I believe that at the bench, in laboratories and in academic breakthroughs, lie the cure for the dread disease.  However, the real miracles are not in the test tube, not in modern alchemy, but in our hearts and the love that we give to our fellow man.

 

22 Comments

  1. Beautiful sentiment. The most powerful “cures” of all are still hope and love.

  2. What a beautiful testament to human kindness.

  3. Hopefully none will get arrested as what they did was illegal in most states. I understand the problem and applaud the solution. In this country you need money to get necessary health care, at times a lot of money. ACA care does not solve that fundamental underlying problem. And if you live in a state that did not expand medicaid, like I do, the situation is even worse.

  4. For you to be touched by and to share that story is what makes you and other compassionate caring people special. You are blessed .

  5. So good, Doctor. Thank you for using just the right words.

  6. beautiifullly put… thank you once again…
    sad to reflect on my mother’s many medications that we tried to donate back to doctors, hospice nurses , pharmacies … all to be refused … knowing it might have eased someone’s pain or helped hold cancer at bay for another day … I’m pleased to know perhaps things have changed…

  7. Now that was a beautiful way to start this snowy day. That can also happen in the infertility community where coverage can also be difficult.

  8. While a donation from strangers of 47 pills seems to be the story here, the real story is much bigger: it’s that Roger had “drained his savings on surgeons, oncologists, radiologists” before arriving at this crisis point in his medical care. The fact that the focus here is on the kindness of strangers (who, as Liz correctly points out, are very likely breaking the law by giving pharmaceuticals to other patients) simply underlines the gross inequities of U.S. health care. The sharing also brings up other questions: who is responsible for correctly dispensing these meds to all of the Rogers all across your country? Who’s responsible for unanticipated issues like contamination? Or can care providers simply gloss over safety concerns because Roger is poor?

    In this seemingly touching story, the appalling health care gap between the haves and the have-nots is the story that actually needs to be told.
    regards,
    C.

    • I’d have to agree with Carolyn. The last line is heartwarming. But this is an episode in a sea of despair. Though people did a good thing, why shouldn’t this be de rigueur instead of exceptional? In the depths of poverty, there are so many who needs medication. What about the type 1 diabetic who needs insulin? What about the cardiac patient who needs daily medicines? Not just one either, but maybe a handful. Where are giving people then? Where is the collection for them? These people are generally forgotten.

      Instead of just giving a pill, which is kind, how about working for structural change? How about joining efforts like Access Our Medicine – http://accessourmedicine.com/? Or speaking up on social media, tweeting directly to Big Pharma the travesty of their unconscionable price gouging and patent trolling.

      The one thing that strikes me about this is how it’s done in secret. If we do these things silently, we allow the injustices to continue. Granted in this case, what everyone was doing was illegal but it’s not illegal to simply say out loud, everything about this is wrong. That it had to happen at all is wrong.

      So thank you to the kind folks who donated their medicine. But my true thanks would be be to those who speak out loud and do something so they never have to think about donating medicine again.

    • I believe telling the story of inequities is not the solution. I loved this story. But it reminds me of the stories of death camps where prisoners shared the last vitamin pills. The law put them in the camps..

      Let’s focus on changing the laws and considering the Excess Profits Tax.

    • and in the meantime…..your answer is?

      • But Carolyn’s point can’t be made too often. We are living in a system that kills people all the time, for lack of appropriate care and from grinding stress and fear that will happen. We need universal health care as a right. In the meantime, too darned many politicians and pundits tell us that we have the best system in the world and that we have it because we love it. Nothing to do with all those profits behind the curtain. (Only, the profits aren’t necessarily hiding.)

        • Also, the politicians that say we have the best system and love it (or should) exempt themselves from it. The rules that apply for us, don’t apply to them. What’s their incentive for change?

    • And the inequities go beyond the issue of medication. Last June we decided to do watch and wait for something that needed a biopsy (for an ongoing cancer) as I could not afford to add to my payment plan the $5000 this would have cost me. Had I added that I would have been kicked out of MD Anderson cancer center for failure to keep up with my payment plan. While my gofundme account, up until last month and the month coming up, has kept me in health insurance (this state did not expand medicaid and I do not make enough for a subsidy), it has not been enough to deal with the growing debt I owe for medical care. Odds are high shortly I will have none unless I can figure out how to make at fund go viral. Begging, whether on the street corner or electronic, is not the way to fund individual health care for the poor – whether recently poor due to health problems – my situation – or chronically poor. Incidentally I’d be homeless now too except a friend gave me space in her basement. Can we say, welcome to [insert least developed nation of your choice here] for the access to health care I will soon not have in this first world nation?

  9. Beautiful. A lovely story to start the day.
    [Dr. Salwitz, thought you might want to know the first paragraph appears twice.]

  10. My husband died very suddenly. I had just collected his prescriptions none was opened but the pharmacist said they had to be destroyed. What a complete waste of drugs and money, this was in the UK but it sounds the same with you.

  11. This is a wonderful piece. It left me in tears. So much suffering and it takes the patients to donate their pills to ease the pain. Too bad Big Pharma won’t help. They can advertise 7 days a week 24 hours a day on TV for drugs they want to sell.
    Well thank you very much for an inspiring story.

  12. I give a hearty second to Carolyn Thomas. Lovely that people want to share, but the real story is the systematic toll of medicine-for-profit. Which the ACA has left secure.

  13. I agree with Liz, Carolyn, Margaret and Kathleen. The loving and “pretty” stories are uplifting to the spirit but do nothing to solve the underlying problems. They simply mask them. So what happens on day 48? Will someone travel outside the U.S. and secure more pills for Roger where the price for the same drug is much cheaper? That’s illegal, too. Not the price but buying them.

  14. Just heard on the radio that scientists in So. Cal have learned how to “un-hard boil” a hard boiled egg. On the surface sounds stupid, doesn’t it? However, they reported that it constitutes restructuring protein that could be used to streamline the process for creating cancer drugs and make them cheaper. Will it? No one begrudges the right of a pharmaceutical company to make a profit. However, how much of the money they receive/use for R&D is supplied by the public through the millions and millions of dollars donated every year by people who know the pain and fear of disease? Perhaps, the same people who would give up their pills for someone they’ve never met?

  15. I am so sorry to read this. I live in a country with universal healthcare. My cancer treatment was free (tax funded), I never had to co-pay anything. Chemo, radiation, scans, tests, pills, wig, everything was already paid for, I feel so lucky and privileged. Getting a cancer diagnosis is hard enough, you should not have to worry about financing the treatment

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