:00:11. > :00:18.This nurse has three small vials of medicine worth �9,000. Each
:00:18. > :00:24.patient's bill for this one drug is �250,000 a year. There are scenes
:00:24. > :00:29.like this across Scotland. Behind the smiles is a ci
:00:29. > :00:33.circumstances drugs like these cost huge amounts and treat only a few.
:00:33. > :00:42.They make drug companies a fortune, but are they bankrupting the vfs?
:00:42. > :00:46.- NHS? The drug market is $50 billion and growing.
:00:46. > :00:53.With Scottish health boards looking to make cuts, can we expect it?
:00:53. > :00:58.expect we will be looking back and thinking, "Did we really pay that
:00:58. > :01:05.for that small amount of benefit?". Are drug companies holding the NHS
:01:05. > :01:09.to rand dom? Firdapse is an example of unbridled greed.
:01:09. > :01:19.Tonight BBC Scotland Scotland investigates, life, drugs and
:01:19. > :01:31.
:01:31. > :01:41.For thousands of of years plants like these formed the basis of our
:01:41. > :01:44.medicines. But times have changed. This is an investigation into some
:01:44. > :01:49.remarkable drugs and the amazing prices some companies are prepared
:01:49. > :01:56.to charge for them. 30 years ago, if you developed a rare disease,
:01:56. > :02:02.the chances are none of the big drug companies would have been
:02:03. > :02:08.looking for a cure. It wasn't their worthwhile for a mere handful of
:02:08. > :02:11.patients. But the US and the EU brought forward incentives to
:02:11. > :02:19.encourage drug companies to fin treatments for the rare and brutal
:02:19. > :02:24.diseases. They call them orphan drugs. Drug companies were given
:02:24. > :02:30.fast-tracks through the clinical testing process, extra long patents
:02:30. > :02:36.and a monopoly on supply. They were given tax breaks and subsidies,
:02:36. > :02:40.extra help and encouragement to make the much-needed medicines. And
:02:40. > :02:45.it worked perhaps too well. Today, drug companies are making billions
:02:45. > :02:49.of pounds out of these orphan drugs. Many, but not all of them, are
:02:49. > :02:59.remarkable medicines, but can the NHS in Scotland afford to keep
:02:59. > :03:00.
:03:00. > :03:04.shelling out millions of pounds on them every year?
:03:04. > :03:08.Lesley Loeliger is an electronics engineer. She used to travel the
:03:08. > :03:13.world, now she looks after her family because seven years ago, she
:03:13. > :03:17.was struck by a mysterious illness. I was having to be carried up and
:03:17. > :03:22.downstairs. I was having to be dressed and undressed. I couldn't
:03:22. > :03:25.even do that for myself. Sometimes when I was so bad and I was so
:03:25. > :03:29.exhausted I couldn't turn over in bed. It was that bad.
:03:29. > :03:35.What Lesley didn't know she developed an orphan disease. A
:03:35. > :03:39.condition so rare it baffled her doctors for over 18 months. When
:03:39. > :03:44.the diagnosis came, it was devastating.
:03:44. > :03:49.He said you have paraxize monocturnal haemoglobin. PMH for
:03:49. > :03:54.sport. It is a bone marrow disease with a survival rate of ten years.
:03:54. > :03:59.To stop a deadly blot clot forming, less by was given transfusions
:03:59. > :04:03.every six weeks. They kept her alive, but her quality of life
:04:03. > :04:07.remained low. I ached the hole time. My muscles
:04:07. > :04:14.were aching. I had difficulty swallowing and pains in my stomach
:04:14. > :04:20.and headaches. At about that time I was also made aware of a drug that
:04:20. > :04:25.was available for PMH. We were told it is not a cure for PMH but it can
:04:25. > :04:29.give a person their quality of life back and that drug is Soliris.
:04:29. > :04:35.Soliris is the world's most expensive drug. It costs about
:04:35. > :04:42.�250,000 a year for each patient. It is made by the American drugs
:04:42. > :04:47.firm. It spent 15 years and $800 million developing. It is the first
:04:47. > :04:51.and only drug approved to treat Lesley's condition.
:04:51. > :04:56.When I heard about the drug, I was told, you are not funded. You are
:04:56. > :04:59.not likely to get it. It is one of the most expensive drugs. That was
:04:59. > :05:04.the end of the conversation really, but the consultants were trying to
:05:04. > :05:10.get me the drug. The Scottish Medicines Consortium
:05:10. > :05:14.says Soliris isn't cost effective and does not recommend its use. The
:05:14. > :05:19.drugs company says its its price is fair because it bore costs and
:05:19. > :05:22.risks in the drug's development. They say the value reflects several
:05:22. > :05:27.factors including that a third of patients died within five years
:05:27. > :05:32.before Soliris was available and governments and private insurers in
:05:32. > :05:36.over 35 countries recognise the life transforming value of Soliris.
:05:36. > :05:44.The company says it continues to spend a great deal on the
:05:44. > :05:47.manufacturer of the drug and on support for people with PMH.
:05:47. > :05:54.Lesley's doctors were able to persuade the Health Secretary her
:05:54. > :06:00.case was exceptional exception andal and -- exceptional and
:06:00. > :06:03.Soliris should be prescribed. To me this drug is a miracle. My
:06:03. > :06:07.family had to face the possibility of me going in ten years. My
:06:07. > :06:11.husband had to face the chance of bringing up the children on his own.
:06:11. > :06:21.My mum and dad faced the pont of lose -- possibility of losing their
:06:21. > :06:24.daughter and I appear to be getting better. I am just so grateful.
:06:24. > :06:31.Because it is so expensive, the Health Secretary only allows eight
:06:31. > :06:38.other people with PMH in Scotland to get Soliris. Three other people
:06:38. > :06:46.aren't so lucky. Their case isn't considered exceptional enough. One
:06:46. > :06:50.thing is certain, it is an exceptional price tag. For people
:06:50. > :06:54.who have been helped by a medicine like Soliris, it is worth its
:06:54. > :07:04.weight in gold. The trouble is that for the National Health Service, it
:07:04. > :07:06.
:07:06. > :07:13.costs more than 300 times its weight in gold.
:07:13. > :07:20.But with so few patients, why is it worth making Soliris at all?
:07:20. > :07:24.I asked Dr Kiran Meekings, a business analyst. She co-authored
:07:25. > :07:33.this report on the future of orphan drugs. Soliris up until this year
:07:33. > :07:38.is the world's most expensive drug and in 2012 it is estimated to make
:07:38. > :07:43.make �1 billion in sales. Analysts think expectations is that it will
:07:43. > :07:47.make up to �2 billion because of increased re-positioning into other
:07:47. > :07:52.diseases. It can do this because it has a small number of patients, it
:07:52. > :07:56.charges the high price. And that's just Soliris. There are
:07:56. > :07:58.dozens of orphan drugs treat ago range of rare diseases. They are
:07:58. > :08:03.special drugs and because they treat rare diseases they get
:08:03. > :08:07.special treatment from lawmakers on both sides of the Atlantic.
:08:07. > :08:13.Research subsidies, tax breaks, relaxed testing protocols.
:08:13. > :08:18.The open drug market the moment is $50 billion US dollars and growing.
:08:18. > :08:22.It is growing at 6% per year. Soon that's going to become a large sum
:08:22. > :08:27.of money. With regards to the future projections, it would be
:08:27. > :08:30.interesting to see what the market can bear because at some point
:08:31. > :08:35.payers and reimbursers, there will be a ceiling on the prices the
:08:35. > :08:40.drugs can procure. It is just when we reach them.
:08:40. > :08:46.In the UK, the payers are us, through the NHS and that means the
:08:46. > :08:51.drug companies are making millions. Here in Glasgow, they are holding a
:08:51. > :09:01.national conference for the growing number of people who have been kept
:09:01. > :09:02.
:09:02. > :09:06.alive by another orphan drug. It is called Imatinib. 15 years ago these
:09:06. > :09:11.people's diagnoses, chronic myeloid leukaemia was a death sentence.
:09:11. > :09:15.was diagnosed about three years ago and it came as a shock. I never
:09:15. > :09:19.heard of CML. Life doesn't get any better. It is
:09:19. > :09:23.a second chance of life. All of a sudden, you have got cancer, it is
:09:23. > :09:27.not that bad. You got a little Tablet that can --
:09:27. > :09:31.tablet that can control it. It made such a difference for myself and my
:09:31. > :09:35.family and my friends. But is it worth it? To the patients,
:09:35. > :09:39.yes. I think that cost whilst it is a
:09:39. > :09:42.big factor, it has to be looked at the life it is giving to us. This
:09:42. > :09:48.hit me out of the blue as it may well hit anyone who is out there.
:09:48. > :09:54.When you have that phone call and you are sat down opposite somebody
:09:54. > :10:00.who says, "I can give you a normal life and it is going to cost you
:10:00. > :10:10.�25,000 ." You will take that and anyone watching this will take that.
:10:10. > :10:12.
:10:12. > :10:20.But turning a a fatal condition into one that people can expect to
:10:20. > :10:24.life life as long as us. Gleevec is a success story because it had six
:10:24. > :10:30.independent orphan approvals which many it can realise over �4 billion
:10:30. > :10:35.in one year. Gleevec now treats 200,000 people
:10:35. > :10:42.worldwide. People who don't just have CML, but other cancers too. It
:10:42. > :10:46.is forecast that people with CML will cost the NHS across the UK �2
:10:46. > :10:52.to �3 billion over ten years. Is it right that orphan drugs should be
:10:52. > :10:56.priced on this kind of scale? That would would pay for 25,000 heart
:10:56. > :11:00.transplants. Daphne Austin knows the effect
:11:00. > :11:05.these high drug prices are having on the NHS. She used to have to
:11:05. > :11:08.make decision about which life- saving drug should be funded or not
:11:09. > :11:16.funded during her time working there.
:11:16. > :11:21.We now have drugs that are so highly priced, you are looking at
:11:21. > :11:26.maybe spending, you know, �10 million for one person's treatment
:11:26. > :11:33.for one drug over the course of their lifetime. And personally, I
:11:33. > :11:38.think that's too high. I think we have lost some sense of proportion.
:11:38. > :11:45.I think we have lost some sense of value about what things really are
:11:45. > :11:49.worth. If we are paying very high prices and paying for a lot of very
:11:49. > :11:54.high cost treatments, it means that other people people aren't getting
:11:54. > :11:57.the care that they need. These drugs are costing the NHS
:11:57. > :12:03.huge amounts. How do the pharmaceutical companies justify
:12:03. > :12:07.the prices? Frances Macdonald is from the body
:12:07. > :12:12.that speaks for the farl suitical industry -- pharmaceutical industry.
:12:12. > :12:18.The figure for bringing any medicine to market is �1 billion.
:12:18. > :12:24.The one medicine that brings it to market has to recover the cost of
:12:24. > :12:27.those that didn't make it to market. Of those that start in phase one
:12:27. > :12:37.clinical trials only one in ten will come through.
:12:37. > :12:42.
:12:42. > :12:45.So where does that research Monday kwhri go? -- money. This is the
:12:45. > :12:48.sort of science campus that any self-respecting university would
:12:48. > :12:52.kill for. It covers almost 100 acres, it employs 2,500 people -
:12:52. > :12:56.with the sole purpose of developing new medicines. Glaxo Smith Kline is
:12:56. > :12:58.one of the biggest pharmaceutical companies in the world. Here in
:12:58. > :13:01.Stevenage they carry out the earliest stages of drug
:13:01. > :13:09.development.But I want to know if the cost of research justifies the
:13:09. > :13:12.high price of orphan medicines. GSK we invest something like �4
:13:12. > :13:15.billion a year in research and development throughout the company,
:13:15. > :13:17.and of course we have a huge discovery capability and some of
:13:17. > :13:27.the benefits of that discovery, those discovery activities, will
:13:27. > :13:35.
:13:35. > :13:38.come through into our development of new treatments for rare diseases.
:13:38. > :13:41.What is GSK's pricing policy for these drugs? We have developed what
:13:41. > :13:46.we believe is a fair approach to pricing, to allow us to make these
:13:46. > :13:49.treatments available to patients around the world. If GSK has a fair
:13:49. > :13:53.price policy, does that imply that perhaps there are some companies
:13:53. > :13:55.out there that are pricing drugs unfairly? I certainly can't comment
:13:55. > :14:00.on other companies' pricing strategies. I can only comment on
:14:00. > :14:03.our own. We believe that what we do is fair. It has a sound basis to it.
:14:03. > :14:06.There's a clear framework in which we use information to inform us on
:14:06. > :14:09.how we should price the medicine, and that pricing information, that
:14:09. > :14:19.pricing proposal will go to payers and they ultimately will make the
:14:19. > :14:19.
:14:19. > :14:22.judgment on whether they consider that to be a fair price as well.
:14:22. > :14:28.The pharmaceutical industry says it spends �4.6 billion a year on
:14:28. > :14:32.research and development. But are some companies using that as an
:14:32. > :14:35.excuse to charge too much? The drug Diaminopyridine - 3,4 DAP for short
:14:35. > :14:45.- is used for people with a rare muscle disease called congenital
:14:45. > :14:50.myasthenia. Doctors in Britain have prescribed it for decades at a cost
:14:50. > :14:55.of about �1,000 per patient per year. This woman - now a PhD
:14:55. > :15:00.student at Lancaster University - was born with congenital myasthenia.
:15:00. > :15:03.She's been on 3,4 DAP since she was a teenager. When I was 13, they
:15:04. > :15:08.said they had a new drug they wanted to test with me, to see if
:15:08. > :15:12.it would make a difference. I said, oh yeah, fantastic, anything that
:15:12. > :15:15.will make me better. So I went in for a week with my mum, and yeah,
:15:15. > :15:18.from there, I'm just like a new person ever since I've had it. I
:15:18. > :15:26.have much better muscle strength, I have much better muscle control.
:15:26. > :15:29.I've only been in hospital once since I've had it, in 10 years.
:15:29. > :15:32.Siobhan's version of 3,4 DAP was made by small suppliers and the
:15:32. > :15:35.drug was not subject to the same regulations as licensed drugs. But
:15:35. > :15:41.US drugs company Bio Marin quite legitimately did get a license for
:15:41. > :15:44.another slightly different version called Firdapse. Because Firdapse
:15:44. > :15:47.has been licensed as an orphan drug, the drugs company can charge much
:15:47. > :15:56.higher prices and has a monopoly of supply.They're charging up to
:15:56. > :16:02.25,000 pounds a year for Firdapse. It's unclear if Siobhan's local NHS
:16:02. > :16:05.trust will pay that. I remember when she told me, it was like the
:16:05. > :16:09.longest hospital appointment I've ever had, and I don't think I said
:16:09. > :16:12.a word after she'd told me, because I was just in shock and I just felt
:16:13. > :16:17.sick. Siobhan says if she can't get her treatment, her life will be
:16:17. > :16:24.seriously affected. I want a family, I want all the things any normal
:16:24. > :16:29.young person would want for their future. For me personally, if they
:16:29. > :16:32.say no that's not the end of the road. My family has gone as far as
:16:33. > :16:42.to say if they need to they will sell the family home to make sure
:16:42. > :16:45.that I can continue having it. going to have to say I think
:16:45. > :16:49.Firdapse is, is an example of just unbridled greed. We didn't need
:16:49. > :16:54.that drug. I mean I absolutely fail to understand why we pay so much
:16:54. > :16:58.money for things. I mean most of the public health community try and
:16:58. > :17:04.resist some of these high spends. But I have to say we haven't had
:17:04. > :17:07.much success in doing so. And of course it means that then if we're
:17:07. > :17:15.paying very, very high prices and paying for a lot of high cost
:17:15. > :17:19.treatments it means that other people aren't getting the care.
:17:19. > :17:27.Marin say Firdapse is a better drug than 3,4 DAP - which is not subject
:17:27. > :17:30.to the same national regulatory or safety mechanism. They point to a
:17:30. > :17:34.study which showed 3,4 DAP was found to deliver inconsistent
:17:34. > :17:37.levels of the active drug. They also say the cost is capped at
:17:37. > :17:47.�25,000 each for the two Scottish patients taking the drug, and
:17:47. > :17:50.
:17:50. > :17:53.they've added value by setting up an eigh-year-patient registry. We
:17:53. > :17:56.put a European-approved list of 66 orphan drugs to a leader in the
:17:56. > :17:59.field of evidence-based medicine. Does he think they're all worth it?
:17:59. > :18:07.The major thing that stuck out in my mind immediately was the cost,
:18:07. > :18:10.the excessive costs. As he looked through the list he came across a
:18:10. > :18:13.drug even I recognised. There's a particular drug called Ibuprofen
:18:13. > :18:17.that many people will recognise over the counter, and that costs
:18:17. > :18:21.about 8p per gram. Now you can use intravenous ibuprofen, same drug
:18:21. > :18:23.just in slightly different form. It has to be injected, in children,
:18:23. > :18:31.for a small operation and for patent ductusarteriosis - big word
:18:31. > :18:34.but it's a little hole in the heart. Now, when that goes from the
:18:34. > :18:43.generic form at 8p per gram to the actual intravenous form, the
:18:43. > :18:46.licensed orphan drug, it costs �6,500. Why does it cost so much?
:18:46. > :18:48.Because it, you can charge that, because you can charge that because
:18:48. > :18:54.one of the things about the incentives is you actually have
:18:55. > :18:58.exclusivity of the market once you get the orphan licence. A gram is a
:18:58. > :19:04.large dose in the pharmaceutical world - a baby would be given less
:19:04. > :19:07.than that. It's made by Orphan Europe. They say Pedea has been
:19:07. > :19:10.specifically developed as a ready to use intraveneous formulation for
:19:10. > :19:13.a very fragile patient population that is different to those who
:19:13. > :19:15.normally use ibroprofen, that it has a very good safety profile and
:19:15. > :19:25.that it is priced in a socially responsible way, reflecting the
:19:25. > :19:27.drug's value and the cost of research. It seems that the special
:19:27. > :19:29.incentives offered to drug companies to research and
:19:29. > :19:36.manufacture unpopular medicines, have turned orphan drugs into a
:19:36. > :19:46.lucrative part of the market. And the drug companies want us to
:19:46. > :19:47.
:19:47. > :19:50.concentrate less on how much these drugs really cost. It's very easy
:19:50. > :19:58.to talk about $200, $250k per patient per year in the US. It's
:19:58. > :20:07.easy to say we make 90% gross margin. As an industry we need to
:20:07. > :20:17.move the discussion from price to value. So the simple reality is we
:20:17. > :20:20.
:20:20. > :20:22.need to. Just how much is this costing the NHS? Although each
:20:22. > :20:25.disease may affect a relative handful of people, put together
:20:25. > :20:31.more than 300,000 people in Scotland are living with an orphan
:20:31. > :20:36.disease of some kind. We asked every trust and health board in
:20:36. > :20:44.Scotland how much they spent on a list of orphan drugs. 11 out of 14
:20:44. > :20:47.replied. They said they spent �17.6 million on these drugs last year.
:20:47. > :20:52.Drug companies are businesses - they have a legal responsibility to
:20:52. > :20:55.their shareholders to deliver dividends by making profits. These
:20:55. > :21:05.little pills were born in the homeland of modern capitalism - the
:21:05. > :21:17.
:21:17. > :21:25.United States of America. This is where the whole idea of orphan
:21:25. > :21:27.drugs began and where much of the research and development happens.
:21:28. > :21:31.Oregon's Health and Science University hospital is located -
:21:31. > :21:41.James Bond-style - high on a hill above the city of Portland .It was
:21:41. > :21:43.
:21:43. > :21:46.here a doctor found himself in the middle of the orphan drugs debate.
:21:46. > :21:50.Dr Brian Druker helped develop Gleevec for his leukaemia patients
:21:50. > :21:59.and fought to get it from the lab to the dispensary. He's something
:21:59. > :22:02.of a hero to people with chronic myeloid leukaemia. Iit was our
:22:02. > :22:05.tradition to write a letter to family members of somebody we lost
:22:05. > :22:08.and every time I'd write a letter which was really difficult, I would
:22:08. > :22:10.say I'm going to dedicate my career to making a difference, to doing
:22:10. > :22:16.something that will be fundamentally different than what
:22:16. > :22:19.we're doing today. 13 years ago Dr Druker helped develop Gleeve cand
:22:19. > :22:29.carried out clinical trials here at OHSU, but then found an unexpected
:22:29. > :22:36.
:22:36. > :22:39.problem in bringing the medicine to market. The biggest concern was
:22:39. > :22:42.with the market size of about 5,000 new patients in the United States,
:22:42. > :22:50.5,000 new patients in western Europe, how is a drug company ever
:22:50. > :22:53.going to make back their investment for this small market of a disease?
:22:53. > :22:57.But Gleevec did make it to market. And it's been highly lucrative,
:22:57. > :23:00.turning into one of the top five best selling orphan drugs in the
:23:00. > :23:06.world. Last year it earned Novartis $4.6 billion. So why do you think
:23:06. > :23:09.Novartis feels able to pitch the price of Glivec as high as it is?
:23:09. > :23:11.It's very simple, it's what the market will bear. It's very simple
:23:11. > :23:14.and their, their responsibility is to their shareholders and to
:23:14. > :23:23.maximising profits and to getting a return on investment to put back
:23:23. > :23:25.into developing new medications. Novartis says Glivec has
:23:25. > :23:28.fundamentally changed the outlook for thousands and that the current
:23:28. > :23:30.price "reflects the value that it brings to patients and society. In
:23:30. > :23:40.addition Novartis has supported more than 200 clinical studies
:23:40. > :23:42.
:23:42. > :23:47.since Gleevec entered trials in 1998. In some ways it can seem
:23:47. > :23:49.remarkable that orphan drugs get made at all. There is little
:23:49. > :23:52.incentive for a pharmaceutical company to develop an orphan drug
:23:52. > :23:56.at all. After all they can be tricky and costly to bring to
:23:56. > :23:59.market. And then that market is just a handful of patients. Is that
:23:59. > :24:02.why they cost so much? The US government has given huge subsidies
:24:02. > :24:12.to its pharmaceutical industry for research and development - or R&D -
:24:12. > :24:12.
:24:12. > :24:16.to help it develop and test orphan drugs. Money well spent. Or is it?
:24:16. > :24:22.The high cost of the R&D is one of the reasons cited why the cost of
:24:22. > :24:29.those drugs is so high. But I've come to Harvard Law School to meet
:24:29. > :24:31.one professor who has his doubts. This man is investigating the drugs
:24:31. > :24:39.industry as part of a Harvard centre looking at institutional
:24:39. > :24:43.corruption. Research and development costs, known as R&D,
:24:43. > :24:46.for new drugs, ranges between about �1 billion and �5 billion. The most
:24:46. > :24:53.widely used figure is �1 billion and nobody really knows what their
:24:53. > :24:58.R&D costs are and they make sure that nobody can know. Calculating
:24:58. > :25:00.the exact cost of developing drugs is difficult. Professor Light
:25:00. > :25:03.thinks �1 billion - the figure commonly quoted by the drugs
:25:03. > :25:13.industry - is an overestimation, and only represents average
:25:13. > :25:14.
:25:14. > :25:17.spending for the most expensive drugs on the market. So if you
:25:17. > :25:22.correct for that distortion you're already down to about a third, a
:25:22. > :25:32.third of a billion. Then there are the subsidies from the orphan drugs
:25:32. > :25:33.
:25:33. > :25:36.law. $$WHTE That brings this figure down even further.r Then half of
:25:36. > :25:39.their so-called R&D costs are actually an estimate of the profits
:25:39. > :25:42.they would have made if they hadn't started the project in the first
:25:42. > :25:45.place, or profits foregone. Those are what the drugs firms say they
:25:45. > :25:52.could have made if they'd invested their money in the stock market
:25:52. > :25:55.instead. So if you take that out, on the grounds that it's not a
:25:55. > :25:58.legitimate part of R&D which I think there's a good argument that
:25:58. > :26:02.it isn't, you're down to �100 million and that's one-tenth of
:26:02. > :26:05.where we started. The goal of companies is to have scores of
:26:05. > :26:09.blockbuster drugs, that is scores of drugs that sell over a billion
:26:09. > :26:19.dollars each and orphan drugs can do that if you price them high
:26:19. > :26:26.
:26:26. > :26:36.enough. The price of orphan drugs in many cases is very high. Why,
:26:36. > :26:38.
:26:38. > :26:46.why do you think drug companies are charging so much? Because they can
:26:46. > :26:50.get away with it. So what are we to take away from what the professor
:26:50. > :26:53.told us? That despite the claims by some big drug companies that it can
:26:53. > :26:57.cost as much as a billion pounds to take the drug to market, that might
:26:57. > :27:03.not be the case and yet the price of some new drugs - particularly
:27:03. > :27:13.orphan drugs - can be eye- wateringly high. The problem is
:27:13. > :27:16.
:27:16. > :27:19.some of these drugs are blocking the market for innovation in new
:27:19. > :27:21.treatments to come on-line because they're taking all the cost. We
:27:21. > :27:25.can't afford any new treatment coming through that may have impact.
:27:25. > :27:27.So what does the future hold? worst case scenario here is people
:27:27. > :27:31.realise there are about 35 million patients that this applies to.
:27:31. > :27:33.There are lots of orphan drugs and lots of orphan diseases still to be
:27:33. > :27:36.tackled and actually we start swamping health care payers with
:27:36. > :27:39.costs across the board with these very expensive drugs, and they get
:27:39. > :27:42.overwhelmed and just say actually we can't look at any of these.
:27:42. > :27:45.There's too many coming our way. Could medicines which save lives be
:27:45. > :27:49.so expensive that they're bad for the health of the health service?
:27:49. > :27:51.What does the industry say to that? Can ABPI put its hand on its heart
:27:51. > :27:54.and say that all pharmaceutical companies that, are actually
:27:54. > :27:57.pricing drugs fairly, and that maybe some of them are actually at
:27:57. > :28:01.it? I don't think the pharmaceutical industry per se can
:28:01. > :28:03.answer that question as you put it, but I would say that most drugs are
:28:03. > :28:06.very reasonably priced, I think society should value the fact that
:28:06. > :28:10.the medicines are being developed, and that there's benefit to the
:28:10. > :28:14.patients. But society then has to say, do I want to pay more or do I
:28:14. > :28:18.not? And that is a broad discussion. They have to say, do I value the
:28:18. > :28:21.fact that parents might get back to work? Do I value the fact that this
:28:21. > :28:25.child may have a better quality of life? They need to discuss what do
:28:25. > :28:32.we want to pay for, and they need to assess, what do we consider
:28:32. > :28:35.value nowadays for these drugs and not keep it too narrow.
:28:35. > :28:42.Scotland's drugs bill has been rising - it's set to top �1.5
:28:42. > :28:51.billion this year. And health boards have been told to cut this