Bad news for benlysta


Socialized medicine countries will review whether they will allow Benlysta due to the high cost. It is starting with UK, but other socialized medicine countries usually follow their lead. Could USA also end up refusing you the drug under Obamacare??

UK Cost Agency Reconsiders Snub For GSK Lupus Drug

(Reuters) - Britain's healthcare cost watchdog NICE said on Friday it was reconsidering a decision to recommend against use of GlaxoSmithKline's lupus drug Benlysta on the state health service, following an appeal by the drugmaker.

The National Institute for Health and Clinical Excellence (NICE) will refer the issue back to a committee of experts, after an appeals panel at the agency upheld two points raised by GSK.

Draft guidance from NICE last September recommended against use of the medicine given its high cost. NICE puts the cost at 2,308.50 pounds ($3,700) over the first four weeks and then 769.50 pounds every four weeks, although GSK has offered an undisclosed discount.

"The outcome of the appeal is a positive step," said GSK's UK general manager Erik van Snippenberg.

"However, the restrictive nature of the NICE appraisal and appeal process remains a challenge and we continue to be concerned about our probability of achieving a successful outcome and reversing the negative determination."

Benlysta, the first new treatment for lupus in a half-century, was approved in Europe last year. It was co-developed with Human Genome Sciences, which GSK acquired this year in order to gain full control of the medicine.

Short of a sit in, or a protest, guess we can only hope for the best Sheila! Hope you are doing well, sending good wishes for your health and happiness!

It's ridiculously expensive - I just got a statement from the doctor's office and the total cost of the drug, infusion time and blood tests last month was $7400. Fortunately I have very good insurance and I only have to pay $30. No wonder health care costs are so crazy here in the US. I haven't seen any benefit yet from Benlysta and I'm ready to stop - that will save my company a boat load of money.

Ann, thanks for the research you do. That's good to know, that Obamacare won't create a plan like socialized medicine!! REALLY good to know! However, the cost will be a HUGE issue for individual insurance companies too. I have heard about 2 people so far who were denied Benlysta because the insurance company said the drug was "exorbitantly overpriced". One was some state's medicaid, another was a private insurance it could be an issue with some individuals just due to the cost. One person mentioned the first infusion was $4500, with almost $1000 weekly after that.

Oh you must have been inspired. I didn't think of the words "full spectrum" until just now, because if it is "FULL spectrum"...of course it has UVA and UVB. I also learned that pilots have 40x higher rate of cataracts because they are so much closer to the UV source (sun) and some does filter through windshields and glass.

True, Benlysta will have to prove to be more effective and show that it would save society money if it makes sick people well, because they would not need as much medical care, and they could be more productive in society.

Ann A. said:

Sheila W.

PS - thank you for always reminding me to think about florescents when I think about UV. The reading lamp that rashed me up didn't have one the new CFBs. I actually bought two "full spectrum reading lamps." Yes, me the Queen of telling people to protect themselves from sunlight, actually bought two full spectrum reading lamps. The only reason it took me so long to get this little flare from them is that the cataracts had made me so blind that I was reading electronic books. As soon as I healed from the eye surgeries, I started reading hardcopy books again. The floor standing gooseneck full spectrum reading lamps were positioned so that the light was directly on the book and my hands and forearms. I do not think that any rheumy or dermatologist would have every figured that out. So thank you for raising my consciousness about artifical sources of UV.

The costs of new drugs are ridiculous. Perfect example is a young father who has brain cancer in my city. Medication cost in $10,600 per month and his insurance denied him. He put the first month on two of his credit cards and it is working well for him. There are several fundraisers going on to cover the costs for next months dose.

It takes 7 years to get these drugs generically. If people are making donations to cancer research where do these researchers who received that money get off charging so much! I just don’t understand.

Even if you can get it covered, insurance rates go up to offset the cost. My husband owns a small company and our health plan has 7 people on it (3 employees and their family members), if I were to try to put any of these expensive treatments through it would make our rates so high we could not afford the plan. The insurance company expects us to spend a maximum of 60% of our premiums, if we go over that our rates go up accordingly (although there is a maximum increase they can impose per year, it would eventually get to the unaffordable level. Such a frustrating situation.

In Canada, your drugs are only covered when you are in the hospital. In fact, in recent years, they stopped covering pre-existing prescriptions. So if I go into the hospital for something, I would need to bring my NSAIDs with me. However, drugs prescribed by doctors during my stay, would be covered while I was “in hospital”.

Most provinces (with the exception of New Brunswick and PEI) have catastrophic drug coverage. What that covers is drugs you can not afford which would save your life. I’m in New Brunswick, so this is why the young fathers drugs aren’t being covered. If he lived in another province it would be. I like most aspects of our health care system. No one “can’t afford” to see a doctor and have tests run. There is no question, if your doctor orders the tests they are done, no questions asked. We do have wait times, but that is largely based around your health status. No one who is “urgent” waits for anything and they get good quality care. I can’t complain about our system although another member brought to my attention that services in the more rural areas are sometimes limited. So it’s far from perfect. It just breaks my heart to here of someone not getting the care they need. These expensive drugs that are so promising also falls into the heart breaking category for those that cannot afford them.

Hi Roni, fellow Canuck.

I'm in Alberta, and different people have different levels of provincial insurance. There are cases on the news where someone couldn't afford their cancer meds and they ask for donations to help them, especially children. When Mom's in the hospital, all her meds are paid for while there, even pre-existing use medications...but they tell ME to bring my prescriptions from home. So strange that so many different levels of care can be in one insurance company, Alberta Health Care and Alberta Blue Cross.

I am thinking that most countries are leery of Benlysta and not wanting to spend so much on it, because they have no clue about the long term effects it could have on people, and so far not enough data is in to consider it a VERY effective drug. Also one down side that they realize is that if a person has a reaction to it, they will be having that reaction for 3-5 weeks, unlike being able to stop an offending pill if it makes you react all these make them hesitant to fork out so much money. I hope it all changes for the better soon, for those who CAN take it.

Yes, I'm sure this is why insurance companies are not thrilled to pay so much for such a doubtful drug that was rushed through before fully being tested, because the pressure was on to come out with ANY new lupus drug after 50 years of not having one.

Ann A. said:


I have read several of the Benlysta studies and LOTS of summaries of them. And so far the data do not support the idea that it is very effective. From what I have read to this point, the drug is "moderately" effective for a subset of lupus patients and less effective for others. Some of the studies are down right scary.

Hi Sheila,

Thanks for adding the Discussion..the UK are on about stopping other drugs besides as companies are earning more sending them abroad to foreign countries.

Takecare Love Terri xxx

Yes the title looked encouraging but they still say it will probably be a "no". They say in the article

"However, the restrictive nature of the NICE appraisal and appeal process remains a challenge and we continue to be concerned about our probability of achieving a successful outcome and reversing the negative determination."

It might actually be a blessing if some can't get the drug, since it was rushed onto the market without proper testing, and seems to make people so very ill for the whole month that the drug is in their system. It's not lilke a pill that you can just stop taking. It could be a danger now, and we don't know the long-term horrors it might cause.