[mark-lParticipant]

http://tompride.wordpress.com/2014/02/07/bayer-ceo-admits-cancer-drug-is-not-for-poor-but-only-for-rich-western-patients/

 

[duskParticipant]

What should make doctors in the NHS and the public really angry is how these internationally dominant pharmas have restrictive practises for copying their drugs for all to benefit who need them. They are never taxed enough to ensure that their profits do not go to CEO’s and rich shareholders ;- after all the drugs will be trialled on the poor before being approved for use by regulators.

Also England is not making available for front line myeloma drugs which are effective and form the norm in the US and elsewhere in Europe, unless a consultant makes a specific representation for an individual- few do this and trials are the only way to access novel drugs by an large in England. This does not help us myeloma sufferers get the best for us as individuals. Infact it is evident forum members are aware that instead of the options that should underpin treatment for individuals we are rarely, if at all, given these. This is just not right.

[mark-lParticipant]

Indeed. What is so sad is that the Researchers in the big Pharma companies are totally dedicated to their work, and really strive to help mankind.

These sorts of decisions are made by business people at the top of the Pharma companies with one eye on their stock options.

[FrancesParticipant]

Please can you tell us a little more about what these drugs are that we’re not being allowed access to? I’m currently in a somewhat stressful limbo of knowing that I’ll have to start chemo very soon, but with no idea of how it’s going to affect me, and precisely what the drugs involved will be. But I do need to feel that my haematologist is going to do what’s best for me.

[mark-lParticipant]

Well, this article is self-explanatory.  Nexavar has been priced by Bayer knowing that it would not be affordable in developing countries, but in the UK, you’ll be fine.

I’m sorry you feel so anxious about  your chemo. But you must sit down and talk to your Consultant. Understand what’s going to happen to you, the treatment, side-effects and so on. They will be more than willing to explain everything.

Myeloma UK produce lots of useful information, and there’s plenty to read here. Be pro-active, and make a list of the questions you have.  If you don’t fully understand the answers you receive, say so and push further. Others will tell you that the more you understand about this disease, the easier it is to cope with.

• This reply was modified 10 years, 9 months ago by  mark-l.

[duskParticipant]

Dear Francis

Although Velcade is used now more frequently as part of the initial treatment regime, in e.g. USA, NICE have not approved it in England for this, although some consultants may be using, e.g. by applying for special dispensation to the Cancer Rssearch Fund. Velcade (and many novel drugs by Pharma) are deemed expensive, so the NHS regime is not yet including it for first line treatment,  (CDT is the standard and has been for long).  It is mostly available to those participating in trials where these exisit.

You need to ask your consultant what regime he is suggesting for you and why- if you feel you want to understand the approach he is taking with you.

As people have noted on this forum although there is talk about individualising treatment for myeloma patients, as each is different, this does not match the reality of experience when treatment is given. After relapse from initial treatment in England novel drugs tend to be used more – aside from there use in trials.

These are political issues. The prime minister says he is waging a war on cancer- but not making available readily all the drugs which could be helpful or which are effectively used in other countries.

 

[dickbParticipant]

I think there are two issues here, 1st the drug companies do have an almost monopoly on drug pricing and do make big profits for shareholders. What you have to remember is that a lot of the big institutional shareholders are pension funds and insurance companies. The pharmaceuticals pump a lot of money into peoples pension funds.

Next not everything that comes out of the US is good. They have had a number of scandles over the years where drugs where not tested properly or the tests were controlled by a party with a vested interest. Whilst they have tightened things up I still don’t believe everything they say. I think you are far better off having an independent body such as NICE deciding – even if their decision making is skewered by cost. Don’t forget, care in the UK is free at source, care in the US is insurance based – no adequate insurance – no treatment.

And another thing, there seems to be a mass rush to go on trials. Trials don’t guarentee anything, they may not actually work which is why they have the trial – to check effectiveness. If something has approval then it has been through trials, is known to be effective as a firstline treatment and if it doesn’t work then there is the likes of Velcade as a second line treatment.

[duskParticipant]

For information- Scotland’s equivalent of NICE has approved Velcade for initital treatment.

The issues too are more complex than often realised. Most poorer people do not have pensions invested in big Pharma so it only adds to the matter of not making drugs available to all in need and as I said these are political matters.

I  am personally very very worried at what options are available for my own pending treatment. I had fallen for the false notion that I would be given an individalised approach to treatment, allowing all relevant issues to be taken into account. I also belived I would be given real options based on current knowledge, (IMHO The USA and England are not so different save the cost restrictions/ insurance issues), how wrong I was. This is causing severe distress to me personally which I would rather not wish on anyone. When I read posts  on this forum I feel very sad for some and happy for others.

[CarolsymonsParticipant]

Even Australia is using Velcade for front line treatment, but here in the UK, from my experience you have no option but CDT for initial therapy. The only reason surely is its cost as Velcade has been proven as more effective. Yes you can join a trial and get Velcade, but when I researched that option and asked to be referred my consultant was against it, saying most people responded to CDT. Even the trial to get Velcade is not researching its effectiveness, but whether by using Velcade you can delay SCT. As I relapsed after 3 weeks off CDT, I regret not pushing harder for a referral to the trial, but at the time I was a novice and believed the consultant. Now I know better -he was just following the standard line of treatment. I still believe my lambda light chains may well have been reduced with Velcade, whereas CDT did little for them. Maybe, with Velcade I could have avoided SCT????

Carol

[mark-lParticipant]

Whilst I appreciate that this is  not a “campaigning  website”, but rather One to share experiences and give support/advice,  it does no harm to mention these sort of practices to your MP.

The NHS is there to provide the best treatment or us all, and costs should not play a part in determining medical treatment.

*stands back, expecting a flaming*

[andygParticipant]

CDT is used for initial front line treatment because it is very effective. Also a cheaper option I must admit. Velcade is not a wonder drug it has serious side effects and it is also considered to only give short remissions. Just because drugs are new doesn’t mean they are more effective than established treatments.
In the USA you get insurance based treatment. You got the best insurance you get access to the latest most expensive drugs that the medics want to prescribe – more commission for the docs. No insurance sorry no treatment. I’m not saying the expensive drugs don’t work just that the USA health system is profit driven first the patient come further down their list of priorities. In the UK it’s different our drugs are given more on a cost effective base but the drugs that are available are not restricted to the rich only.
No one can second guess which drug will work for which patient though genetic profiling is beginning to be used as an indication. So the established protocol is used. With CDT the first treatment. Not everyone responds to CDT and they move on to the next drug but lots do respond the CDT and move quickly to SCT with great success.
Unfortunately at the moment the medics can’t say which drugs will work best with which patient. So there has to be some sort of order.
Remember no matter what drug we use we will relapse even if we get to SCT we will relapse. So eventually if we live long enough we will get to use most of the drugs out there.
I’ve been through most of the drugs available and not achieved remission with any of them and not got to SCT and will never have a SCT auto or Allo. I’ve been on chemo constantly for nearly 2.5 years now. Like everyone one knows myeloma is a very individual disease and my version of it is not typical.
Everyone wants remission with the fewest side effects of treatment but I’m a bit suspicious of drug companies saying the newest more expensive drugs are better. Though I do think NICE could be quicker with its evaluations of the newer drugs.
Hindsight is an exact science. Second guessing what will and what won’t work at the moment for any individual is just that a gues. Until trials establish a new line of treatment we’re stuck with the one we’ve got.
Unless of course you got loads of money and afford to go private.

Every day is a gift
Don’t waste them

Andy xx

[FrancesParticipant]

Thank you Andy. That was a very helpful and reassuring post

[dickbParticipant]

Read the last couple of posts, Andy has hit the nail on the head. Drugs are available if you are willing to pay and take the risk – after all you can get any drug that’s available in another country if you are willing to pay.

Mark, you’ve raised a relevant point but I would suggest that the party your MP belongs to may affect his response. I would also suggest the constant meddling the politicians have done with the NHS have greatly hindered care rather than aided it. Ultimately, back to the original point about cost of drugs and profit, we live in a capitalist society. Our whole ethos is related to profit and personal gain for the individual. History has shown that Marxist communism unfortunately doesn’t work no matter how noble the cause is.

[mark-lParticipant]

Well, SHE (my MP) is actually a Tory, and like everyone else has conceded that Healthcare is to be rationed for the foreseeable future.

“Meddling” by politicians actually CREATED the NHS in the first place! A novel concept of healthcare – to be provided on the basis of  NEED, not the ability to pay. A principle that remains cherished and supported by the vast majority in this country.

Nye Bavan said it would last as long as people ” had the faith and were prepared to fight for it”. I’m not sure how this is related to”failing Marxist/Communism”. The NHS is hardly a bastion of that.

Anyway, let’s not distess “dusk” any more who clearly wants more PRACTICAL help and advice, and take the discussion off-line

[coastiParticipant]

MyelomaUK were presenting today to Scottish Parliament committee on getting earlier access to new drugs.  Don’t know what the outcome was though

http://www.scottish.parliament.uk/S4_HealthandSportCommittee/Meeting%20Papers/Papers_for_Meeting-25_February_2014.pdf

Laura

[Author]

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