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Sandeep Singh Dhillon
When The Drug You Need Doesn’t Make Money – Forbes
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By Alison Bateman-House, CONTRIBUTOR

What if a drug you need doesn’t earn enough money for the company to continue making it? In thinking about this, let’s start with a hypothetical. Unfortunately, you cannot eat protein or gluten–no matter what form they are in, if you consume either, you become violently ill. So you have learned to eat a gluten- and protein-free diet (for the sake of our hypothetical, let’s not worry about whether this is in fact possible). You’ve tried everything you can find at the grocery store, online or made from scratch, and the food that best keeps you healthy and functioning is a vegan “PowerBar” made by the food company VeganDelite. You eat them at least five times a day, but apparently there aren’t many other fans, because VeganDelite announces that it will stop making its PowerBars. You call to protest this decision, only to have the customer service representative say he’s sorry that the company won’t be making your favorite product any more, but there are other vegan PowerBars on the market and surely you’ll like one of them. You protest, explaining you’ve tried everything else, but VeganDelite’s version is what works best for you. This isn’t a mere matter of preference: your health and well-being are at stake. The man apologizes but says he just isn’t able to help you: it was a corporate decision and made due to insufficient sales in the face of alternative substitutes. So you go online and start a petition, but it doesn’t get much attention or traction. You call your local news channel and your congressional representative, but nobody seems willing to join you in calling for VeganDelite to change its decision and continue manufacturing a product for which there is apparently little demand except for you.

Now let’s drop the hypothetical. The parents of one-year-old Christian Mumm are calling on pharmaceutical company GlaxoSmithKline (GSK) to make available its anti-seizure medication Potiga. However, GSK stopped selling the drug at the end of June. The company reports that “as few as 1,500 patients with epilepsy are treated with this medicine globally, with numbers continuing to decline.” 1,500 patients around the world is akin to VeganDelite making its PowerBars just for you. But while you were unable to stir much sympathy for your cause, Mumm’s hometown held a rally in support of the family’s quest to keep their son on Potiga. An online petition was started, gaining over 2,300 signatures in its first three days. Congressman John Larson has weighed in, stating, “It just is so disturbing to me that there is a solution here and all that it requires is a company to say yes, they will make available this successful drug that helps this child out.”

Potiga isn’t the only anti-seizure medicine on the market: indeed, it is apparently only used by a handful of patients. But Mumm’s doctors have tried around seven other medications and found Potiga best at preventing his seizures while preventing debilitating side effects. So Mumm and his family have good reason to desire the drug to continue being available, but GSK also has good reason to stop manufacturing and selling the product.

Is it appropriate or reasonable to demand a company to continue making a product when it does not want to? Does it matter that in one case the desired item is a drug and in the other a food? Does it matter than in one the person who needs the item is a child and in the other it isn’t?

Comparing these real and hypothetical cases highlights several issues. First, we think drugs are somehow different from other goods, even goods as vital as food. I think this is because we view drugs as inherently tied up to issues of life, death and health, even more so than our hypothetical medically necessary food bar.

Also, we tend to want to help identified victims, particularly so-called “innocent victims,” whose suffering is in no way self-inflicted due to lifestyle or behavioral choices. Our hearts ache for little Christian Mumm, who has gone through so much in his one year of life, and for his family, who must be aghast that the drug that has helped their little boy won’t be available anymore­—not even because it has been found to have additional or worse side effects, but because of a market decision. We know, as background knowledge, that both in our country and globally there are innumerable people who are unable to access the drugs they need. But it is hard to grapple with that vast problem of unnamed people, whereas a story of a Connecticut child is much easier to identify with and to feel morally engaged by.

Third, we tend to think of pharmaceutical giants as faceless, deep-pocketed entities for whom it would be no trouble at all to keep manufacturing a drug. We don’t think about the fact that the manufacturing facility being used to produce Potiga could be used to produce a more utilized drug that lots of patients could benefit from. Instead, we seem to think multinational pharmaceuticals have unlimited resources of people, manufacturing capability, raw ingredients and all the other things needs to produce, for an indefinite period of time, a drug.

Finally, this case points out that in some cases the free market leads to results we find uncomfortable, disturbing or even morally untenable. GSK has no market incentive to produce a drug that it sells to only 1,500 people. When it comes to drug development for rare diseases, where perhaps 1,500 people globally constitutes the entire population of patients with a certain condition, companies have made it worth their while to discover and develop drugs because they are sold at astronomical prices. Because there are no other treatments, insurance companies and governments will purchase those incredible expensive drugs. But in the case of epilepsy, where other treatments beside Potiga are available, GSK would not be able to say, OK, we will continue making the drug but we must raise its price exponentially to be able to justify our ongoing investment.

That the market sometimes seems to fail us ought not be a surprise. After all, campaigners for those diseases that occur primarily in the less wealthy regions of the world have been making this argument for years. If a drug, vaccine or device can be made but those who would purchase it are not capable of paying the prices necessary for the developer to make a profit, what do we do? Do we expect philanthropic agencies to leap into the breach, as the Gates Foundation has done with the quest for a malaria vaccine? Do we say to companies that, as a price of doing business (and, in the case of GSK, quite profitably), they must also make and distribute drugs like Potiga that will likely lose money but help a small number of patients? Do we demand GSK surrender its rights to Potiga to a government or foundation that might be able to make the drug? Do we set aside money to fund such drug production?

These are weighty issues that will not be solved quickly. In the meantime, GSK ought to scour its inventory to see if there is extra Potiga that can be made available to Christian Mumm and any other patients in his situation. The energy being spent to rally and sign petitions ought be diverted to asking stakeholders in this issue–government, business and philanthropic–to resolve this ongoing issue. For the congressman who says the solution is just for GSK “to say yes,” what are you going to do to persuade the company to say yes? Is there political will to force business to manufacture and provide non-profitable but needed drugs? If not, what solution is preferable, and who will be responsible for enforcing it? Not only a one-year-old in Connecticut, but people around the world are waiting impatiently for the answer. Up until now, we’ve kicked the can down the road. When are we going to actually deal with this issue?

Read the full article here https://www.forbes.com/sites/alisonbatemanhouse/2017/07/18/when-the-drug-you-need-doesnt-make-money/#677ada4b5576



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