I enjoy watching “60 Minutes” on Sundays. Two recent episodes focused on drugs companies. Both of the stories were negative, and deservedly so. But they made me wonder.

One was about Purdue Pharma, a company that has misled doctors and patients about how addictive its drug OxyContin actually is. The other was about Kaleo, a company that has jacked up the price of naloxone, a drug that counteracts opioid overdoses.

Those stories made me wonder what “60 Minutes” could do if it also showed its millions of viewers people with cancer or other devastating illnesses who, thanks to biopharmaceutical companies, are alive today because of drugs those companies developed.

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From my perspective as someone with a rare disease, the conversation about the biopharma industry — which is essentially “bad pharma” — appears scarily without nuance. I am not advocating on behalf of companies that act immorally, unethically, or illegally. But I don’t believe that the industry is villainous, as media coverage suggests.

I was diagnosed with Friedreich’s ataxia in 1981. This rare, inherited disease causes damage to multiple systems in the body, including the nervous systems. Many people with it need a walker or a wheelchair to get around. The disease can also cause fatigue, slurred speech, diabetes, cardiomyopathy, hearing loss, vision loss, and scoliosis.

When I was diagnosed with this always disabling and often fatal degenerative disease at age 19, it was poorly understood and the focused effort to find treatments for it hadn’t begun. I recall one doctor predicting I would be dead in 16 years (he was obviously wrong) and another telling me, “Take some vitamin E. That might help, but we aren’t sure.”

Fortunately for me, and for the millions of people like me with rare diseases, advancements in research over the past 30-plus years, many of them from the biopharma industry, offer not just hope but extra years of life.

The patient organization serving those of us with Friedreich’s ataxia, the Friedreich’s Ataxia Research Alliance, lists 20 treatment approaches in various stages of development. Even though there is not yet a proven treatment or cure, I can’t begin to express how hopeful this makes me. Many of these pharmacological and biological approaches, supported by the biopharma industry, are in or nearly in clinical trials.

Scientists would not be where they are in terms of treatments for Friedreich’s ataxia without the understanding of the disease’s causes and mechanisms that have emerged from research funded by the federal government, the Muscular Dystrophy Association, Friedreich’s Ataxia Research Alliance, and others. But neither the government nor these private organizations have the human or financial resources to translate this understanding into treatments and cures. The biopharma industry has the means and the will to do that. Those of us with rare diseases need industry’s engagement and investment to help us stay, or become, healthy.

The industry scientists I have met are motivated by a desire to cure disease. Do their companies want to make money? Of course they do. But I would rather have a company make money by helping me be healthy than by helping me look cute. No one is outraged that The Gap makes money. Why should people be outraged that a biopharma company makes money?

In the U.S. today, the search for cures and treatments relies on industry. Maybe that needs to change. And bad actors definitely need to be punished. But just as we don’t condemn the entire auto industry because Toyota put cars with malfunctioning gas pedals on the highways, we shouldn’t villainize the biopharma industry because some companies and their leaders put profits over people.

I can imagine people thinking I work for a biopharma company or was asked — or paid — by the industry to write this article. None of those are true.

Casting the biopharma industry as a villain discounts the experience of people like me who have been engaged with, and are relying on, industry for the treatments we so desperately need. I plan to keep educating myself about what is happening in this industry, both bad and good. I will join in decrying bad actors. But I urge the media and politicians to help the American public see the good these companies do.

Jean Walsh volunteers for the Friedreich’s Ataxia Research Alliance Ambassador program and the Merrimack Valley Hospice, based in Lawrence, Mass.

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  • The reason People are outraged by Drug Manufacturers is because they often charge outrageous over-the-top prices for drugs that are far and above the cost to research, manufacture, and market them! Making a profit is one thing, but charging unfair, unnecessary, sky-high prices to become Billionaires is another, especially when they force millions of Americans to either forgo the medication or take less than prescribed because they are priced right out of the ability to pay for them.

    And, there’s a Big difference between looking cute with “Gap” clothes and NEEDING a health-giving drug you can’t afford to buy. Foregoing “cute” clothes is NOTHING compared to foregoing medicines you need to keep you and your family healthy and alive! PLUS, there are dozens of other clothing stores you can comparison shop at, but there may be only ONE Manufacturer of the drug you need, especially if it’s under patent, so your choices become severely limited–pay the rent or pay the outrageous price for the drug. Feed the family or buy the drug. Live or die.

    Make no mistake, Drug Mfg charge these outrageous prices TO MAKE BILLIONS IN PROFIT, not to cover overhead. Making huge profits over the Health and Wellness of their own Customers that need the drugs but can’t afford them is NOT Noble, Humanity driven, or Healthcare conscious. We aren’t talking about clothes here, we’re talking about millions of Human lives that are affected every day by disease and illness that can’t access the treatment they need because they are priced out of the ability to pay for them.

    If there weren’t regulations and controls placed on other Healthcare entities like Hospitals, Physicians, Labs, Xray Centers, Treatment Centers, etc It would be the same thing. MRI’s would cost $25,000, surgery $500,000, X-rays $40,000 etc. Most people would not be able to access Healthcare because of outrageous costs that they can’t afford or that their Insurance refuses to pay for. It should be the same way with Pharmaceutical Companies–they need some controls and regulations in place because they provide a service within the Healthcare field so Everyone and Anyone should be able to access their goods—their drug prices need to be analyzed, compared, and brought into an acceptable fair-market price so that Anyone who needs their drugs can afford to buy them. That’s not to say some drugs won’t cost a lot more than other drugs, but what they are doing now is inexcusable–Overcharging for even cheap older generics, increasing prices 200% or more when they think there’s a market for them, Catastrophically charging for life-saving drugs like Cancer drugs, Orphan drugs, Anaphylactic drugs, & Hepatitis C drugs, charging over-the-top prices for important daily chronic drugs like Diabetic drugs, Cholesterol drugs, Seizure drugs, etc–and it doesn’t matter if the drug has been around for years cheaper, they’ll single one out and crank up the price astronomically. How can they do this to People? and Why do they do this to People?

    Simply put, BECAUSE THEY CAN….

    They are driven by greed. There’s no competition and there’s no controls put on them, they laugh all the way to the bank at our expense. They can charge any price they want, Customer be damned. Even if the drug costs 25 cents a pill to manufacture they can and do charge us $10 a pill to buy. And the billions they make–only a very small portion goes into research, drug development, and manufacturing. They spend BILLIONS on Lobbying—paying off Congressmen, Committee Chairmen, Politicians, even Patient Advocacy Groups like the American Cancer Foundation, The Epilepsy Foundation, Rare Disease Foundation, and many others to keep them silent about curbing drug prices or passing legislation limiting control of drug prices. Unfortunately, those that accept their bribes are selling their Souls–and our Lives–to the Devil.

    The Scientists may develop the drugs to help Humanity. But when Big Business takes over all they see is dollar signs. They take advantage of humanities miseries of disease and ill-health. A Patient may have a desperate need for the drug but The Drug Co exploits their misfortune and makes them dearly pay for it. When the Patient foregoes the drug altogether due to cost, or cuts back on the dosage to make it last longer, it becomes a tragedy for ALL OF US. They get sicker, or die sooner, or live in misery. Their family and friends suffer along with them. And often they won’t even divulge they couldn’t afford the medicine due to pride, shame, or guilt feelings. This doesn’t happen in any other Healthcare entity in our country because of the regulations that govern them, but Drug Companies have no such regulation or control so they exhort, defraud, lie, and steal from all of us.

    And those that are paid off by them support them. Those that try to fight them meet tough roadblocks and retreat. Those that take the drug companies “contributions and funding” to be silent on drug pricing pretend that they don’t, but then won’t speak up in favor of regulation even though they Know their Patient is suffering under HIGH costs. Drug Companies spend Billions of dollars a year to keep these people and groups under their thumb and ruling in their favor.

    So, here we are, for far too long, still in the same boat, with the Drug Companies calling all the shots, and the American people suffering needlessly because of it. People like my husband on the drug Gleevec for Leukemia. Gleevec is 13 years old and costs $1.92 per pill to manufacture (per Forbes). BUT Novartis Pharmaceuticals charges $196.00 per pill to BUY it. The cost is $5900.00 for 60 tablets per month. Through his Medicare Part D Plan our cost is still $1534.00 per month–our Total monthly drug costs are $1850. My husband tried foregoing this drug but almost died. So I begged anyone and everyone to help us get this medicine. We’re 65 and on Medicare but was refused help because our monthly income was $3,100–didn’t matter that just ONE drug costs us $1534 a month with total drug costs of $1850 leaving us $1150 a month to pay our mortgage, buy groceries, & pay our utilities, which was impossible to do. So I begged elsewhere and he was finally given a grant to help with the cost of Gleevec. Grants only last for 6 months so we have to search and hope for help twice a year. If Novartis would charge what it costs them to manufacture this drug, PLUS a reasonable 25% profit, the TOTAL cost of my husbands Gleevec would be just $143.00 per month–that’s TOTAL cost! His Medicare drug plan would cover it all except for a $30 or so Co-Payment we would pay. And we wouldn’t be struggling for the rest of our lives to get this Outrageously Over-the-top over-priced drug! $1.92 a pill to make and $196.00 a pill to buy. I’d say they set this price out of total greed, because they know the People who need it will probably die without it so that gives them the opportunity to make BILLIONS OFF SOMEONE ELSE’S TOTAL MISERY!

    You must believe The Drug Companies are NOT on Our side. They are only on the side of their own Greed. Novartis finally released the patent on Gleevec last year so long-awaited Generics finally arrived. Well guess what? They charge almost as much for the generic as they do for the Brand drug–it’s $4500.00/month for generic versus $5900/month for the Brand! Other Drug Companies wanted a piece of the pie that Brand Gleevec brought Novartis Co. so now They Way Over-charge even for the cheap Generic Gleevec!! My husband was allergic to the excipient in the generic Gleevec so had to resume the Brand form anyway. Yes, we are very grateful this drug was made. Without it my husband would be dead. With it he lives a healthy, fruitful life. But none of that gives the right for a Company to charge any price they want because they believe the Patient will find a way to buy it. That’s called Blackmail. I call it Highway Robbery. I can only imagine what God would call it….

    We have to keep fighting for change for the good of our American People!

  • Thanks Dee for the information I knew a lot of this but wonder how the pharmacy could do this. Does it surprise me NO. I will be a year that this stuff has been going on. I have been waiting almost a week tomorrow to get my perscription from the pharmacy who said she will make sure she has it next month. I’ve been ask what is my pain WOW. After 15 operations years of disability with pain getting worse and marfan’s Syndrome then have some help for 25 yrs of some peace from pain during 4 detoxes from Drs. that didn’t care. Sorry i agree this is not the country I knew. It is becoming a hostel place for sick people to exist and that’s what we do is exists in pain to suffer because no one cares I will thank the many doctors for try to help suffering people they are the decency that this country is missing.

  • Thank you for sharing your story. People with incurable painful conditions are being sacrificed so others can profit. There’s a push to condemn people in pain as being addicted to this necessary medication. They’re being abruptly cut off, abandoned by physicians. Their choices are Suboxone, streets, suicide, the last two are the same choice. When did they become the enemy? Is it because generic drugs don’t produce profit like branded drugs do? There’s a push to force them on to Suboxone, also an opioid, it doesn’t work for pain. The DEA and Congress have reduced production of pain medication so much that hospitals are experiencing shortages. They were warned this would happen. At the same time ILLICIT FENTANYL manufactured in China arrived in US, people began to be cut off pain medication. Coincidence? This is spreading to people after surgical procedures, accidents, cancer, hospice. Doctors are being threatened with imprisonment for prescribing pain medication. What country are we in?

  • I wish I could agree with you but for the third month in a row I have to wait for my perscription why . I was told that the CDC said to detox people like what i have been through is not good. No it isn’t and my doctors where i live have detoxed me 4 times tell me to stay in a state of complete numbness can’t walk Diaherra for 8 months with no help I have never taken anything from drug addicts or drug dealers that there stuff is laced with fentanle that’s our epperdemic so now some doctors have lost patients who follow the law and yet can’t keep constant sever pain all day long and trying to live with this . There is many rare diseases out there but as long as people don’t live with it they don’t care. or should I say they don’t understand. I know this is what is happening and big pharmaceuticals company now are charging high prices for drugs and that’s why my med are coming like this have they been forced to cut back on helping people survive. My question is when will this stop? To me I am 62 yrs old and I am trying to live under a goverment of crazyness but I will be gone in a few years you on the other hand you must fight for yourself, nobody will.

  • let’s see ~~ the pharmacomedical, everything in the pursuit of the almighty profit industry has no magic solution for any of my issues. Only thing that will make my borked brain and body better is exercise, and I can’t do that in the rain because post-stroke ataxia is a bitch to get up off the sidewalk from.

  • Sorry, but your commentary uses an equally broad brush. Tens of thousands of cancer patients must choose between treatment and bankruptcy because the Biopharma industry has profit margins equaled only by the financial services industry, which has a similarly poor reputation. It wasn’t always this way, but it certainly is now, and it is all actors, not just the “bad” ones. If R&D is the benefactor of all this, great, but don’t try to sell me that when Pharma execs routinely grab $600-$700 million annual bonuses.

    • Im not going to debate all the merits of your argument, but do want to point out that you may have mistyped a few zeros when you said that pharma execs “routinely grab $600-700 million annual bonuses”. Maybe that has happended before, but I don’t think it is routine. The highest paid pharma exec in 2017 made $47 million in total comp. The tenth highest made less than $7 million.

      https://www.healthcareglobal.com/top10/top-10-highest-paid-pharma-ceos

    • I have been getting many postings on Facebook of people who can’t afford there med. Shall i remind of the Epi- pen that they wanted big bucks for the children who can’t go to school with out one, and the people who suffer sever diseases and can’t afford there med why it cost so much if you knew how it feels to not be able to get your med and suffer or die from not taking them may be we would stop screaming all about money. Where is humanity where is caring where love your neighbor as your self. What is going on. I don’t have a problem with people making money but when people who are in trouble from a disease that either runs in a family or cancer that rears its ugly head I don’t see compassion or caring. Daniel I agree with you all the way this is not against you WE must continue helping others.

  • People often forget that it us, the U.S. taxpayers, who provide much of the funding that drives innovation. The cost of the basic science, NIH funded developmental work, and translational science that lie behind new cures is usually forgotten in the rush of self back patting by the pharmaceutical industry.

    • I have heard this erroneous argument for so long now that people believe it to be true. It isn’t. The truth is that the NIH and other organizations may discover a drug, but it is the big companies who are then needed to step in — with resources and the scientific expertise to bring the drugs to patients. We fund the clinical trials that prove the drug works, figure out how much is efficacious (and how much is too much or not enough), pull together the voluminous New Drug Application (NDA) and then have to figure out how to make large-scale quantities of the product, pack it and distribute it across the country. It takes ~$2 billion to bring a drug to market. The NIH portion is $10 million at best. So quit telling me how the NIH and taxpayers fund this. That is incorrect.

  • My wifes’ life was saved by a 21st century drug produced here, only here. It would likely never have been produced in any other country than here. We lead the world in developing new , breakthrough drugs. Is the system perfect ? far from it , and needs some reform . But let’s not kill the golden goose of innovation . My wife had stage iv bc in 2010 and got Kadcyla . Pt.’s with the same dx. in places like the UK have still not gotten full access . Why ? Because elsewhere in the World most healthcare systems are heavily regulated . and lack innovation . They don’t invent the drugs and they won’t pay for them . Your chances are much better here.

  • Thank you, Jean. People making their families’ lives better by making other people’s families lives better is one of the most noble outcomes of capitalism combined with democracy.

    On a side note, wondering what 60 Minutes “could do” is an exercise in futility. Ironically, CBS and 60 Minutes, like pharmaceutical companies, is solely interested in what they can make (monetarily). Unfortunately, that doesn’t currently include portraying the positive results of capitalism. That’s why we need people like you.

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