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Health-care charges can often seem random and frightening, with lots of zeroes attached, even for a person who’s relatively healthy.

But imagine what life would be like with a life=threatening or chronic disease, as readers have written to us here, here and here.(insert links to previous posts) Imagine if your cost for a treatment of a life-saving drug was $2,500  every two months, while the person in the next hospital bed paid nothing?

The discussion turned to high costs not long ago on — of course — Facebook, where our friend Brett Shamosh and his partner, Dr. Ed Shin, run a page for GI Monitor, the mobile and social disease management platform they made for people suffering from Crohn’s disease and ulcerative colitis. Shamosh, Shin and Paolo Teodorani are the founders of WellApps, an up-and-coming company that  develops and distributes disease management applications for patients with chronic illnesses, including GI Monitor.

When Shin posted on Facebook in mid-August about the costs of Remicade, one of the most common drugs used to combat Crohn’s disease, he asked “How much do you get billed for Remicade?” Here are some of the comments:

“I get Remicade 4x a year. My insurance requires I pay 20% until I hit my deductible. SO whatever they get billed from hospital 20% gets sent to me.”

“‎6 times per year. Hospital bills $12,000 each time. Insurance pays $6,000 each time (includes my portion). No idea what the real cost is.”

“The bill is near $13,000 every month but my insurance covers most of it.”

“none thanks to my husbands insurance, I am so lucky”

“Private health insurance covers the hospital costs but I have to pay for the drug, which is approx $2500 per 8 week infusion as this drug is not subsidized by the australian government for ulcerative colitis – however I am thankfully in remission …  so i am not receiving any drugs at this stage – fingers crossed it continues!”

“Ps it’s absolutely abhorrent that the USA don’t have healthcare for everyone – and it’s supposed to be a first world country. Shameful.”

“Mine runs about $10,000-12,000 per treatment every 8 weeks. I get smacked with 20% up to my out of pocket max (which happens at my first treatment of the year), but that’s still close to $2,500. I don’t think I get one year paid off before the next one starts. Sucks big time!”

“WOW I am very lucky! The Aust Government covers the cost for it with Crohns disease. I have been getting every 8 weeks fora few years now and am lucky to have not paid a cent for it. My private health covers my hospital stay.”

“I agree with [name deleted! I can’t believe the bills everyone is getting in the USA.”

“Yes that’s shocking, what would happen if you had chrons/UC and couldn’t afford remmicade? You die? What’s the alternative for those people? What about a colectomy do you have to pay for that? It makes me


really sad to think all of the sufferers in the states have to pay what I do.”

What sparked the post was a Los Angeles Times article by David Lazarus about how much Remicade costs at a hospital there. The piece documented the bills of a 26-year-old patient named Scott Kenyon, who also uses Remicade to alleviate his symptoms from Crohn’s disease.

“The maker of the drug, Janssen Biotech, a division of Johnson & Johnson, says Remicade is sold to hospitals and pharmacies for nearly $700 per 100-miligram vial,” Lazarus writes. “Scott requires an intravenous drip of nine vials every other month — a wholesale cost per dose of about $6,300.

“But according to his most recent bill from Long Beach Memorial Medical Center, the hospital charged $38,064.95 for the treatment. It then discounted that amount by almost $25,000. … In Scott’s case, the roller-coaster of charges resulted in a claim of $13,123.32 being submitted to his insurer, UnitedHealthcare. Of that amount, the insurance company covered $10,498.65 of the cost, leaving Kenyon’s family with an out-of-pocket expense of $2,624.67.”

On this forum at HealingWell, patients shared prices ranging from nothing or $500 out of pocket to $3,000, $10,000 and $26,000.  One contributor is charged $5,000 and pays $1,000 out of pocket. For another, the charge was $7,741.65, the insurance company paid the hospital  $1857.99, and the patient paid nothing. One winner may be a man from Sweden, who writes: “Each visit costs me 100 Swedish crowns, aprox $15 USD. That is on the public insurance system that everyone is entitled to. Life-long if needed.”

The high charges and the steep discount, of course, are familiar to anyone who reads bills: Here’s an example of a lab-test bill we wrote about not long ago.

The charges are high for many reasons, but here’s a simple explanation:  the government’s insurance programs asked a long time ago for reduced prices from providers for Medicare and Medicaid patients.  Private insurers asked for discounts too, and soon the actual charge or billed price bore no resemblance to the contractual, negotiated discounts.

The billed price, then, comes into play when people who are paying a percentage of the billed price — increasingly that’s you and me — have to pick up that 10 or 20 percent, even though the billed price really doesn’t get paid by much of anybody.

The other people who are subject to the higher charges, of course, are people who are uninsured — because they are not covered by an insurance company that has negotiated the price. So the higher price is charged to the people who are often least able to afford it.

One final word on Remicade: a HealingWell reader chimed in not long ago with this advice: “Goto Walmart Super Pharmacy, online or by phone. They sell 4 units of Remicade (enough for a 160lb person), at $2854.36. They will drop ship it (overnight, cold) to your infusion center or local medical provider, directly. This way you can get rid of your provider’s ridiculous overhead charges, which otherwise will run you $5000-$10000.”

We have no way of knowing if this is true or or not, but we are struck by the creativity of people who are finding new and different ways to deal with rising costs.

Have a story about a medical bill you’d like to share? E-mail us: info [at] clearhealthcosts [dot] com.




Jeanne Pinder

Jeanne Pinder  is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded...