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Baden-Baden buying MDMA pills

Guyon Espiner reveals how lung cancer patients are buying cut-price drugs from India, as other New Zealanders fundraise, petition and apply for clinical trials to access medications Pharmac won't fund. Baden Ngan Kee has kept himself alive by sourcing cut-price medicines from India. This is the first story in a four-part investigation into how Pharmac works and whether its model is costing lives. You can read Part 2 here: Pharmac's secret list. The third story is here: Pharmac switches epilepsy drug against Medsafe advice. The fourth story is here: diabetes drugs 'third world' - doctor. Listen to Guyon Espiner discuss this investigation here: Drugs and Money. Baden Ngan Kee edges down the stairs using a black cane topped with a jaguar's head fashioned from silver. He opens the office door leading out to an industrial car park, gives a firm handshake and collapses to the ground. When he was diagnosed with lung cancer he was given six months to live. That was three years ago. His business savvy has kept him alive. Ngan Kee has been sourcing cut-price medicines from India. Pharmac won't fund the medication for lung cancer patients. At first, he just sourced them for himself, using drug mules to bring in high- powered pain killers and then modern cancer medicines. Now he helps dozens of other cancer sufferers around New Zealand - hooks them up, refers them on, sorts them out. It's like something out of Dallas Buyers Club, except we're at his place of work. Baden has fallen at the bottom of the staircase at FoodStuffs, Mt Roskill in Auckland, New Zealand - a country at the bottom of the developed world for access to medicines. Do you fancy your chances? You're not going to get sick and need medication, are you? That's good, because in New Zealand if you do, you may need to be patient, lucky, rich, or at least resourceful. New Zealand spends less on medication per capita, waits longer to buy new drugs and registers fewer new medicines than almost any other nation in the OECD. Unlike other developed countries, New Zealand puts a ceiling on its medicines budget, and drug buying agency Pharmac is very disciplined: In 26 years of existence, it has never breached its spending cap. That spending level, by international standards, is low. Pharmac admits we cut it lean with funding medicines but seems to treat that as a badge of honour; the agency highlighted the fact on page two of its briefing for the incoming Health Minister David Clark, with a graph showing New Zealand just above Mexico in its spending on medicines - second last in the OECD. With the funding cap and 'savings' being funnelled away from drug buying, each time Pharmac needs to free up money to spend on new drugs, it must do so by spending less money on the drugs it is currently funding. Baden Ngan Kee knows just how desperate that makes people. It's always the same story. I understand you are able to get medication from India. Can you help me please? At first he rejected the approaches, wanting to keep his contacts confidential, but as he became more familiar with the process and the business owners, his confidence grew. I've had so many people say, 'Thank you Baden. Thank you for helping me where Pharmac can't'. But Ngan Kee himself is running out of options. The drugs he needs now, as the cancer marches on, need to be processed in a sophisticated machine which he can't get access to. And he's running out of money. They call it financial toxicity. I've got medical toxicity - pain in my back and my head and everywhere - but I've also got financial toxicity. It is so unfair that people with cancer have to think of both sides. You'd like to think that there would be something in the system to look after you after 55 years,' he says. Before he started buying the drugs, he wrote down a number and put it in a drawer: It was his spending limit, and he promised himself he wouldn't exceed it. He's nearing it now. Photo: Supplied. He says patients who need drugs parked on Pharmac's funding waiting list are increasingly bringing in generics from India and sometimes Bangladesh. He doesn't like to promote the practice but understands the desperation. Lung cancer in New Zealand kills people a year - more than breast cancer, melanoma and prostate cancer combined. Pharmac did begin funding Pemetrexed for lung cancer in , but that was nine years after its funding application and 13 years after it was funded in Australia. Hope estimates the long delay in funding the drug meant 15, patients missed out or had to pay for it themselves. He describes a two-tier system. They will have chemotherapy and just go home to die. It's as simple as that,' Hope says. If Ngan Kee's hustle seems difficult, fundraising isn't simple either - patients are entering a crowded market. There are hundreds of Give a Little pages in New Zealand set up by people begging for medicine money. Other desperate patients try to get on clinical trials or compassionate schemes offered by pharmaceutical companies. Most pharmaceutical companies in the country now have Kiwis on compassionate schemes, including US biotech company Sanofi Genzyme who has put New Zealand patients on a scheme, often reserved for developing companies, to fund the drug Myozyme to treat Pompe Disease. Pompe is a rare and often fatal condition which leads to a build up of the complex sugar glycogen, which then damages organs and tissue throughout the body. It has funded it for infants since , but the catch is, there are no infants with Pompe in the country. So despite announcing this as one of the new drugs it funds for people with rare disorders, Pharmac is not actually spending any money on it. There is a petition before Parliament asking Pharmac to fund Myozyme for adults with Pompe. And that's another option for desperate patients - petition Parliament, however that's a crowded space as well. There are eight petitions before Parliament calling for 26 treatments to be funded, from cancers to rare disorders, all pleading for funding from Pharmac. What does Pharmac chief executive Sarah Fitt make of people taking desperate measures to fund their own medicine? If people choose to go and fund medicines themselves then that is their choice … It's like having elective surgery on insurance - you can choose whether to do that rather than going to the hospital system. But what if you are a low-income earner? Absolutely,' she says. Fitt concedes that New Zealand does not offer as many medicines as other countries but claims that Pharmac is smarter. You could find five medicines in the same class that are very similar, you might only need to fund one or two. And that's the strategy that we take. Is she saying New Zealand knows something other nations don't, and that they are wasting money on these drugs? You could be spending a lot more money but actually not gaining a lot of additional health outcomes. When it comes to lung cancer, she says patients often present at a late stage of the disease. It's about screening. The most effective things to manage cancer are screening, diagnosis, radiotherapy and surgery. Medicines make up about percent of cancer control. But Chris Atkinson, an oncologist and the medical director of the Lung Foundation, says many of these new precision cancer medicines are showing remarkable results. While the drugs won't cure them, they are buying them time. When you repeat the imaging in response to some of these drugs that are self-funded they don't have any imagable, active cancer. He says that across all types of cancer, Australia has 55 drugs that New Zealanders can't get, and for lung cancer alone, up to seven more drugs. Atkinson says he is aware some patients are bringing in drugs from overseas themselves but cautions that they may not be what they pertain to be and they need to be properly administered. Talk to Fitt about New Zealand's low spend on drugs and she shows pride in Pharmac's negotiating tactics: 'Well, we would say we get very good pricing. We pay very, very low prices for a lot of our medicines compared to a lot of countries around the world. So our generics, for example, we can be getting percent discounts on medicines. So what about lung cancer drug Pemetrexed that Pharmac funded in , 13 years after it was funded in Australia. Did Pharmac simply initially get it wrong on that one? It was never declined. It was there waiting to be funded on the evidence, for the price that was being asked. Photo: RF. So Pharmac just wasn't prepared to pay the money for it? How does Pharmac decide what should be funded and in what order? What is the value of a life? Pharmac isn't nearly so specific. Some countries, such as Britain, use a system whereby if you meet a certain threshold of benefit it will fund the drug. QALYs measure the length and quality of life. Pharmac doesn't have a specific level of health benefit which triggers funding. It looks at four areas, the so-called 'factors of consideration' - the need, the health benefits, the costs and savings and the suitability of the medicine. But Pharmac itself says the factors 'are not weighted or applied rigidly' and that 'not every factor is relevant for every funding decision' it makes. Critics, including the Breast Cancer Foundation, say Pharmac's decision making is 'veiled in secrecy' and because there are no published minutes of meetings where medicines are ranked, the whole process is opaque. What remains constant is Pharmac's fixed yearly budget cap. Ngan Kee has his fixed cap too. I asked him, 'What usually happens? I want to spend more but I won't. That's what he's spent. It's an eye-popping number but the haggling and hustling required is more extraordinary. A lot of his budget has gone on Osimertinib there is a petition before Parliament for Pharmac to fund it. He managed to get access to a mass spectrometry machine to test the efficacy of the drugs he was importing. But I'm confident. And since then, I've been able to refer a lot of other lung cancer patients to the generics. He's helped breast cancer and colon cancer patients as well as lung cancer sufferers. He says most of the time the drugs make it through Customs in India and New Zealand with a letter of compassion explaining the medications are for personal use not distribution. So is what he's doing legal? Yeah, I can tell you how to get it through Customs. I can't tell you whether it is legal because I don't know the copyright situation. That is where they'd pull you up. It's Ngan Kee who needs to be pulled up today, physically. He's been falling a lot lately and today was a big one. The cancer is taking its toll. And the nurse simply said to me, they die. They die. So that mobilized me to do something to help them. Pharmac is defending its position to not fund a drug recommended to patients with late-stage bowel cancer who react severely to regular chemotherapy drugs. Bitterly disappointed breast cancer patients accused the government today of interfering in the work of a select committee. Pharmac is rejecting any suggestion it reacted to political pressure to fund a new anti-HIV drug. In Depth RSS. Follow RNZ News. Tags: health Pharmac. Related Stories Pharmac defends position not to fund bowel cancer drug 14 Sep Inquiry into Pharmac over breast cancer drugs voted down 10 Apr Author Mark Manson takes a stab at it 'Most benefit' of government's tobacco tax cuts will go to tobacco company Philip Morris, officials told Casey Costello. Get the RNZ app for ad-free news and current affairs. Top News stories Is criticism of Reserve Bank unfair?

Baden-Baden buying MDMA pills