By Dennis Hemus
Many Multiple Myeloma patients have been damaged by the high cost of drug treatment and worse some do not receive treatment at all because of cost. The following is a brief summary of how I came to intimately know the drug Thalidomide and the journey it has taken me on.
I was diagnosed early in 2001 at the age of 54 and underwent an Autologous Stem Cell Transplant that summer. The result was fantastic. Life with my family was back to normal and my recovery was so complete I could play hockey, backpack and do physical work as I did pre MM. I was the happiest guy in town.
The cancer slowly gained another foot hold and in January of 2005 I had a second SCT but that one did not work and I was in trouble! My Calgary Oncologist suggested that I try Thalidomde. (In Canada procedures like SCT’s are covered so there is no serious treatment cost to the patients but when it comes to drugs that can be a different matter.)
I clearly remember asking my Oncologist, Dr. Stewart, “What does this drug cost” and he sort of grimaced and said, “it is kind of expensive……… it will cost you around $3000 a month”. I just about fell off my chair and asked him to confirm that this was the same basic thalidomide that caused horrific birth defects back in the 60’s. How in the world could an old drug like that cost thousands of dollars? As it turned out, my Doctor was wrong as the drug cost more that $4,000 per month. Fortunately for me, while I was being treated in the Province of Alberta I am a resident of British Columbia and The British Columbia Cancer Agency was the last Provincial body in Canada to cover the cost of the drug, so my Thalomid was funded. (Due to the escalating cost of the drug the Agency no longer covers Thalomid for new MM patients but does pay for those on the shrinking list that have been grandfathered in)
The price of this drug simply did not make sense to me. I could clearly remember that the gas I pumped in high school, back in 1966, cost 40 cents per gallon and I wondered what did Thalidomide cost then……maybe at most just a few dollars for a prescription. I contacted the Pharmacy of the B.C. Cancer Agency looking for historical pricing which they could not provide past June of 2000 but what I learned was absolutely stunning and left me with the instant opinion that something was very wrong with this picture. Hence, I committed to do what I could to expose and help correct the situation. I will leave you to form your own conclusions but these are the historical facts.
Note: All prices are in USD and a bottle contains thirty 50 mg. capsules. June 2000: $98.40. January 2002: $210:00. May 2003: $363.00. November 2003: $592.50. April 2005: $898.50. Note: The Cancer Agency does not add a dispensing fee or up charges so the prices quoted above is what the Agency or patients of the Agency paid Celgene for the Drug. Prices increased over 800% in less than five years.
I quickly learned that thalidomide was available in other countries at fractional prices. For example, the drug is currently (January, 2008) available at Serral Laboratories in Mexico for a cost of $90 for 50, 100 mg capsules so a typical 200 mg. dose would costs $3.60 / day and just last week an acquaintance (not an MM sufferer) had a prescription for Thalidomide filled in India and that drug cost her $5.60 for a 200 mg. dose. (Courier and Bank charges included) Compare the 2005 Celgene price for that same dose and you will see it cost $119.30 / day. I wondered if Canadians alone were being charged excessively high prices but learned that people in the United States were also facing the same outlandish costs.
It struck me that the best way to expose the matter was to contact the media. I assumed when the public and elected representatives found out what was going on the proverbial poop would hit the fan. Early in 2005 The Vancouver Sun, The Globe and Mail and my town’s local paper all did excellent articles focusing on the extreme cost of this long Orphaned drug. Global Television sent a crew to my home in Windermere, B.C. and a story aired on Global National evening news. Later CBC regional radio interviewed Health Canada looking for answers. I’m sure the facts presented by the media caused people to shake their heads but nothing changed.
My letters and extensive support materials sent to the former and current Minister of Health expressing concerns about the outrageous pricing received little consideration. Direct questions were not answered and crafted “say nothing” replies were all I got back from Ottawa. The whole effort left me frustrated and a bit cynical but recent events suggest there may be hope for a little justice. This is what we know.
Celgene has been bringing Thalidomide (Thalomid) into Canada under the Special Access Program since 1995. Currently, Health Canada does not have the authority to require the company to make a new drug submission and file a Notice of Compliance. HC has repeatedly encouraged Celgene to do so they have not co-operated. Why not? The answer is clear. If the drug followed the usual channels a new drug submission and NOC would have been filed and without patent protection, a generic form of the drug could be made and competition would bring the price down.
If a drug is patented it comes under the jurisdiction of the Patented Medicine Prices Review Board whether it comes into Canada under SAP or if the Company files a Notice of Compliance, the PMPRB has jurisdiction. Celgene maintained that the PMPRB did not have jurisdiction over SAP drugs but the board ruled on January 21, 2008 that it does have jurisdiction and that has important implications.
Celgene received a patent for the drug on April 4th, 2006.
It seems clear to me that Celgene believes it can charge what ever it wants for the drug and did not want the price reviewed by the Patented Medicine Prices Review Board because that board may determine that the price is too high, according to the board’s Excessive Price Guidelines, and require the company to bring the price down. Also, that board can require a company that has over charged for a drug to refund money to the Crown (government) and that money may in turn, be returned to the Provinces, medical plans and maybe even to individuals. It is curious that the price had been hiked to the current peak level in 2005. Celgene would know of the PMPRB and maybe they thought the board would only look at the drug price post patent date. (April 4, 2006)
In my opinion Celgene has clearly over charged and they deserve to have their finger slapped in a big way. (If readers wish to read the current judgement and related laws I will be pleased to offer directions to online sources.
Companies like Celgene often try to justify profits by claiming that they plow most of their gains back into Research and Development but you know that does not wash. The former CEO Mr. Jackson rode off into the sunset with tens of millions of dollars gained from Celgene stock options.
Celgene discriminates against Cancer patents. They have charged one price for thalidomide when it was used for AIDS but a much higher price when the drug is used for Cancer. The company has been blatant about its discriminatory practices as the follow quotations demonstrate. “When we launched it, it was going to be an AIDS-wasting drug,” says Celgene’s chief executive, John Jackson. “We couldn’t charge more or there would have been demonstrations outside the company.” (When Celgene Corp. got its first drug approved, it priced a 50-milligram capsule at $6) “After new information suggested the drug helped treat MM, Mr. Jackson said he felt justified in increasing the price because the drug had gained value-it appears to help cancer patients in addition to those with AIDS”. In Canada, and in most places around the world, discrimination is not condoned or accepted.
Please understand, I am very thankful for the drug and one of the many that are living proof that thalidomide is an effective short term treatment for Myeloma but that does not change the facts of the matter and that is: Celgene has been taking advantage of us by over charging.
Revlimid, the analog drug of thalidomide, is priced much higher compared to Thalomid and again the company charges excessive prices because they can. They seem to see MM patients as a captive market and act without conscience. The truth is MM patients are a captive market and we essentially just have the big bomb drugs, Velcade and Thalidomide/Revlimid for treatment of our disease. Each drug company wants to stay price competitive with the other but usually we associate competition with bargains or at least fair pricing. In this case we have the companies competing to see if they are pricing their drug as high as the other and they talk of market share in their investment literature as if they were selling buttons instead of life extending drugs. What happened to making something that helps people and making a reasonable profit? Keep in mind Celgene simply found a new application for the old drug Thalidomide and while they did have huge expenses to test and gain approvals for the drug this does not justify charging what they do.
People in the United States are being exploited too. I do not exactly understand what gives Celgene the market protection that they enjoy but it seems to boil down to the STEPS program. It took me almost three years to fully understand the whys and the wherefores of the situation in Canada and I expect that the same careful positioning for profit also exists South of the Canadian border. Celgene seems to enjoy unique market protection in New Zealand, Australia and other countries and I do not know exactly why.
So what to do? In Canada it seems clear that we should pressure our elected representative to influence the Supreme Court of Canada to hear the appeal case between the Patented Medicine Pricing Review Board and Celgene. Nine months have passed since it was ruled that the PMPRB had jurisdiction. Celgene appealed that decision and that court case has not even been scheduled. In the mean time Celgene continues to rack up huge profits. I truly hope that President Obama will keep his word and investigate big drug companies. It seems clear to me that Celgene and the case of Thalidomide is a very clear example of how big drug companies take advantage of captive, dependent people. This is the worst form of gouging. To date the Canadian Government has done next to nothing concerning this issue. It is my hope that the new Minister of Health will do something.
? ConsumerInformant has written more from personal experience on this blog. His mother has taken thalidomide.
Please comment on your own experiences.
My husband has multiple myeloma. We are paying $6,000/month for Thalidomide. We tried getting a discount from Celgene and they said no – apparently saving your whole life for retirement was NOT a good thing because we actually have assets from that savings. They wouldn’t even discount it at all. And as retired individuals, we got the best drug coverage we could get and it’s $2,500/year. That barely covers the acid reflux he gets from the chemotherapy drugs. Maybe if I get sick we’ll be bankrupt and then Celgene MAY reduce the price of the drug for us. The real crime is that Celgene didn’t even invent the drug; nor did they discover its benefits in treating multiple myeloma and leprosy. They’re just capitalizing on someone else’s discovery. This debacle has been on “60 Minutes” and “The Diane Ream Show” on NPR, but still nothing has been done to lower the cost of this drug which, believe it or not, actually only costs approximately $2/pill to make.
I was on thalidomide, revlimid ,leukine, proscar, etc. for a long time. I had too because I had two prostate tumors, one a Gleason 10 and one a Gleason 8. After years, I finally had to quit as I was getting night leg, foot side and even shoulder cramps that were so painful that I had to take narcotics. Those attacks would hit quick and I would roll around on the floor and sometimes even scream and wish I could pass out. Yet, it helped my deadly cancer tremendously.
The costs have spiraled out of control, just soared, since I came down with aggresive cancer some 15 years ago. How sad that it now appears our country will go broke because of the greed involved in healthcare. Canada seems to have problems too. What a terrible dilemma. Damn profiterring in health care should be stopped immediately. No country can withstand this continued rise in costs. Not a damnred one. No happy
I’m not sure how one would find out. Can you find out who the manufacturer is?
I’m a MM patient 25 months out from the autologous stem cell transplant. I take 10mg Revlimid/day and the cost is extreme. Thank God for insurance. I feel great, a little neuropathy in the toes,but this could be previous chemo. I contribute to MMRF and take a look at the new drugs coming. Celgene has given me a chance to be there when they find a cure. So I ask what is the price for living? I would gladly try an experiment to help someone than have no future at all. Celgene, and Texas Oncology has given me that opportunity.
The writer of the original post passed away, so he can’t respond. He was Canadian, and the drug wasn’t covered, nor could he afford to pay for it on his own.
You were in a trial?
I was diagnosed not quite two months ago and was informed by the insurance co. today that my revlomid was going to cost 12,000.00 per month. Thank God for insurance.
I started taking the drug in 2006 it cost $2,000.00 in 2010 it cost $10,778.00
Did you have insurance? I did, and am glad. I don’t know what people do if they have no coverage. Especially middle class people who have an income that’s too high for the Celgene assistance program!
regarding your question: “back in 1966, [gas] cost 40 cents per gallon and I wondered what did Thalidomide cost then……” – about 60 cents. I don’t have the source right now at my fingertips, but is was from a highly trustworthy person.
Seriously… F Celgene. I just got back from Kaiser Permanente’s pharmacy and the drug rang up at $2030.00 for 28 100mg capsules. I’m not going to have to pay that much, but this is borderline criminal.
This company is immoral.
Is anyone having trouble with swelling and pain in their feet from Thlidomide? I can’t hardly walk. I’ve only been on it 3.5 weeks.
You definitely want to have your doctor check this out ASAP. You don’t want to risk missing DVT, so please call your doctor.
The most common serious adverse event associated with thalidomide use for cancer patients has been DVT/PE
Is anyone having trouble with swelling or pain in feet with Thlidomide? I can’t hardly walk from the pain in my left foot.
There is a wonderful place, the Chronic Disease Fund (http://www.cdfund.org/), that gives financial assistance to under-insured patients. This company is located in the United States, in Plano, TX.
It was a blessing for us because, when my mom was taking Thalidomide between October 2006 until March 2007, the cost was from $15,000 to $20,000 per month.
She didn’t have to pay anything.
I hope it helps.
My dad has just been diagnosed with MM and is wondering about the cost of thalidomide, as he has been given an application in the hospital for receiving the drug free of charge from Celgene, based on his financial status. I told him I would do some online research for him, which brought me to this site. I am shocked!!! I don’t know how I will be able to tell him this news. I doubt very much that he would receive free drugs. Is it possible to go to another country and get a Rx or have one filled for a lower cost? For example, he is planning to go home to Hungary in the spring, assuming he is well. Could he somehow get the drug there at a significantly lower cost? There must be a way to get it from Mexico or India or whatever.
Does your dad live in Canada?
Does he have relatives in Hungary who could call a doctor there to ask about treatment costs for him while he’s there? What kind of health care coverage do they have there? Would he be covered?
My understanding of the situation is that the only legal way to get the less expensive drugs in Mexico, is to go there and see a licensed medical doctor for treatment there in Mexico. People have been arrested for trying to carry prescriptions across the US border from Mexico. I would definitely not do that unless I was 100% certain I wasn’t breaking any laws on either side of the border.
I just now saw this website and reading all the messages posted here and I felt like replying to yours. It has been lot of months sice you posted here and you might have gotten some solution.
But anyway, let me tell you about myself. I am also (age 45 now) MM patient since Aug 2006 ad has been on Thalidomide. I don’t have insurance until now. I have been getting it from India.
I would like to contact and speak to Mr Dennis Hemus about Thalidomide. How do I contact him? My e-mail address is ______________.
I attended the Twin Cities Myeloma Foundation annual seminar yesterday in Bloomington, Minnesota. Dr. Gertz from Mayo Clinic and Selgene rep both addressed this issue. The explanations for higher cost were 1) getting approval for use in myeloma after birth defect issues decades ago was difficult and expensive. It resulted in the annoying protocol that we all must go through before our Revlimid or Thalidamide is released to us. (You know, the questions about are we involved with anyone that can reproduce, use a condom, don’t give capsules to anyone else, etc) 2) Dr Gertz, who works closely with Dr Hayman, Dispenzieri and other myeloma docs at Mayo defended high costs of all new chemo drugs by siting high costs of studies- up to $20,000 per patient per trial. Multiply by 600 patients or so needed to bring drug to market and he felt high prices were justified. He went on to discuss need for profit motive and how drug companies are the ones making fastest and most dramatic progress with new therapies. I can see their points. Also agree with gouging post. Just glad that I have good insurance… $3000 yearly deductible and then Blue Cross/Blue shield pays for everything. I will be posting specifics from the seminar and info from 50th annual meeting of ASH during the next week on my blog site, http://www.helpwithcancer.org. Glad to help and keep up the good work- Pat
Hi Beth..since you have Canadian Myelomics reading your blog…how about a link to http://www.MyelomaCanada.ca and http://www.SouthernAlbertaMyeloma.org ?
Great write up by Dennis.
I am lucky in the fact that I do not have cancer. However, I do have discoid lupus which became really our of hand and quite unsightly. I had significant hair loss and deep lesions on my face. Nothing seemed to work, until I tried thalomid. However, when I went to renew a prescription this year, I went into shock when I saw how expensive it is. US 3,649.00. My prescription insurance capped.
Celgene has some programs that might help.
I have never used this myself. My doctor once applied for me, but I was denied because my income was over their limit. I’m not sure why they applied for me since my insurance covers it.
I have discoid lupus— Thalomid has been the ONLY thing that works!!!! The price is obscene, but Celegene will work with you but you must contact them for help….
I am progressive and wear sunblock at night I am careful with my diet, I wear long pants and sleeves year round. The people around me know when I feel like SHIT! I am broken out and can’t think or move comfortably, they are always shocked when I heal and can function normally again!
I used thalomid/thalidomide for six months this year prior to a SCT. It effectively reduced my M-Spike from 4.5 to 0.8. The cost was $4800.00 per 28 day RX of 200 mg. I have a Federal BC/BS health plan and paid just a $35.00 copay.
I am currently drug free thanks to the transplant and the induction therapy. However, I have significant peripheral neuropathy from the thalidomide. I would not use it again due to this. I wonder if when the MM returns the option of using Revlimid may not be affordable as my health plan goes up in price and down in coverage each year.
I can’t remember how much my Thalomid copay was. It was a while ago. While I was taking Revlimid, my insurance company increased the copay for the expensive drugs to $100, but capped total copays at $300 a year for each drug in that tier. When I had Velcade & Doxil, I only paid a doctor’s visit copay of $30. When I’ve ever had treatment in a hospital, my part of the bill was 20%! For that reason, I have chemo in a doctor’s office. I’m lucky there’s one nearby that will do that. Each time in the chair for Doxil was billed at around $5,000. A Velcade push was around a couple thousand dollars.
Neuropathy was also a side effect for me. It’s been with me for the duration. I also took Revlimid and had Velcade, which could also have contributed.