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PHARMA: The Macular Degeneration Rip Off, By PAT AWASH

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Occassionally I get actual patients writing into me at THCB and sometimes it’s worth letting their experience with the system tell a story about how the opaque world of drug and health services pricing comes home to ground level. This is a verbatim email from a 70 year old patient Pat Awash:

Friday, June 9, 2006 I was facing imminent blindness in  one eye and poor vision in the other. Beginning Saturday a miracle began to unfold after an initial injection in my eye of Avastin. Avastin is used to treat mestasticized colon cancer and someone deduced that it might, just might be effective for Age-Related Macular Degeneration, the leading cause of blindness and vision impairment among the elderly.

Due to an undetermined cause, leaking fluid had formed a large blister behind my retina causing four changes in my eye-glass
  prescription between February 24, 1906 and late May, 2006, the last of which
  did not hold for four days. I was frightened to say the least. Only one day after the injection I  experienced a 70% vision improvement. This improvement continues each day and I am using a three-year-old prescription.
 

I am writing in objection to the current policy of the FDA in regard to Avastin. It is an off-label use but the cost is minimal, only $60.00 when provided at cost as my physician does. The same drug company that
  makes Avastin has developed Lucentis which has a slightly different molecular
  structure than Avastin but is basically an analog. Only thing is, Lucentis will cost an expected $1,500.00 per dose. They claim a reported $400 million research cost but I’m wondering what is included in that amount. 

I hope you get the picture. The manufacturer of Lucentis has changed the drug to the degree that it can be classified as a new drug. Whereas Avastin is expensive when used as a cancer drug it is very  inexpensive for eye treatments because the dose is so small, and some would say Lucentis is not as effective. Once approved, Lucentis will be covered by
  Medicare, a windfall for the manufacturer and huge cost to the public considering a rapidly aging population. Gentech could have done the trial on Avastin.
 
  Everything would be ok except Genentech will no longer make Avastin available except to those who exclusively treat cancer patients.
  No off-label applications and no choice for patients. Thankfully, my physician bought a substantial (several month’s) supply prior to the June 1, 2006 cut-off date.
  I find this insane and I think you will too. I am sick and tired of experts saying how much trouble Medicare is in when this kind of shenanigan is going on.

Respectfully, 

Pat Ahwash (a 70-year-old senior citizen)

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7 replies »

  1. After consulting with a physician it will become likely that you need to enhance your vitamin intake based upon the AREDS study. The least expensive AREDS formula on the market is from viteyes.com. There are easy comparison charts that you can use to speak with your doctor, and other helpful resources.

  2. My mother was treated with avastin, her last test shows the disease was halted. Now I hear that people are being offered Lucentis at 10 times the cost. I think this is nothing but a gigantic money grab from the company that produces BOTH drugs.

  3. Have any of you heard about the new study that was done by the British Opthomology. The TOZAL study. In 76% of patients it stopped the Macular Degeneration, and in 25% it reversed it by a net of two lines. It is a Dry Macular Degeneration product that is smoker friendly and is being used as a prevention for those at risk of getting Macular Degeneration.
    You can read the study and the press releases on my website at http://www.ultimatewellnesssystems.com.

  4. I realize that it is a very long time since the above was posted, by Elizabeth.
    I live in France five months a year. I am being treated with Lucentis, in the U.S.
    However, specialist, at Bascom Palmer assures me that Avastin is every bit as effective as Lucentis. My Lucentis injections are covered by medicare and my supplemental insurance. I was told that Avastin was not approved or available in Fance. Therefore, I had to make three trips back home for my injections. I would prefer to simply stay in France, and pay for the Avastin injections.Where were you being treated and by whom.Are you still being treated.
    I would welcome any input…..Thanks
    Rich Nilsson

  5. I have just read Pat Ahwash’s E-mail concerning his personal experience with Avastin. My experience is similar and I wonder if you might be interested?
    A note is that I have the good fortune to live in France, where this drug has no restrictions on use for wet MD.
    Please let me know if you would like the details of my treatment.
    Elizabeth Griffith

  6. I find it insane too, Pat. I really do.
    I think you should send a copy of this posting/email to your Congressman. I also think you should send a copy to Senate Finance Committee Chairman Charles Grassley of Iowa, who is probably the most active figure in Washington working on healthcare related issues.
    http://grassley.senate.gov/
    Of course, you should be able to complain about this to the Food and Drug Administration as well. Does anyone know what the appropriate department to contact for a pricing issue or complaint of this nature is?
    John