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    • #11147
      Jean Mellano
      Participant

      My personal opinion is no.  There is too much money to be lost by the pharmaceuticals.  Right now, since most people with PD are on daily medications for the rest of their lives, there a large revenue stream feeding big Pharma.  If a cure is found, most likely it would be a one- shot revenue boost from each PD patient to whatever company found the cure and the monthly revenues the pharmaceutical companies are currently receiving for all the PD medications would dry up.

      What do you think?

    • #11332
      Jean Mellano
      Participant

      Thank you Frank for your response.

    • #11414
      Paul D Lefebvre
      Participant

      I think the answer to this question depends on: 1) what you think the cause of PD is, and, 2) one’s cynicism, and, 3) one’s economic theory.

      Given how complicated is the question of cause, I believe it may easily -if ever- be more than ten years before that question is answered. And it seems likely to me that PD is one of those conditions that cannot be “cured”. Ever.

      As for cynicism, our experience with the Big Pharma shows us that humankind needs law and order leverage     -dependent societal support- to get Pharma to do the right thing.

      The economic theory in place now supports the owner making as much money as they can; buyer beware.

      It would be quite a political battle to off-set the cynicism, much less the economic order.

      • #11418
        Jean Mellano
        Participant

        Paul, thank you for your well thought out response.   I am the biggest cynic when it comes to Big Pharma (can you tell? :-)).  I do think you have summarized this well.

    • #20578
      BuckslayerNYC
      Participant

      Parkinson’s is an incredibly difficult challenge for patients, caregivers, and researchers. I understand and can empathise with cynics, particularly those who have the condition. My brother was diagnosed with early onset 15 years ago, and I am in the medical research field, so I have a unique perspective (kind of I think) on this issue.  I would caution making a connection between cost/price of current medicines to consumers to treat motor and non-motor symptoms vs. profit  realized by those entities vs. the financial windfall for finding an impactful next step or “cure” for PD.

      Anyone who thinks the profit motive of keeping patients in their current “treatment box” to reap reward$ is stronger than incenting motivation to find new and better approaches is wrong…there is not “illuminati, or “Q”, or cabal working against patient populations in any disease state in this way…it’s nonsensical.

      Comparatively speaking Parkinson’s meds are not “money makers” for pharma…they are mostly non branded generics. The Parkinson’s patient population is comparatively small, compared with say Diabetes, or Crohns….so its not a big money maker currently.

      Conversely a “cure” or radical clinical upgrade would be a HUGE money maker due to the above 2 facts….like the race to the moon. Don’t believe me?   Go Google  https://www.childrenshospital.org/centers-and-services/programs/f-_-n/gene-therapy-program/conditions-we-treat/beta-thalassemia     See this rare condition? See this therapy? its a one time approach and pharma charges upwards of $1mil per in circumstances like it for conditions in adult cancers currently….

      So pharma would be happy to trade the levodopa and interventional surgical device therapies for such an arrangement if they could….and of course this is just the economic argument against such cynicism…it does not take into account the fact that most Parkinson’s research is independent or government initiated, not big pharma….

      I think we all need to focus a bit more on understanding the difference between “personalized medicine” and “precision medicine” to get an idea on where and when the next breakthroughs will occur. Parkinson’s is a completely different journey per PWP….lessons learned from each traveller are not necessarily applicable to the population at large…and therein lies the challenge. Here is to focusing on today, what tomorrow can bring, and my brother Patrick who wakes up each day with hope!

      • #20650
        twok
        Participant

        Agree with Paul…well written and thoughtful.

    • #20599
      Dr. C
      Participant

      My research (“Possibilities with Parkinson’s” column) indicates that the more we learn about Parkinson’s the more we discover how much we don’t know.  Research is being done on the early diagnosis and prodromal symptoms of the disease.  The early intervention that I received with levodopa has made a tremendous difference in my current medical symptoms 7 years later.  I advocate for a healthy lifestyle as well — exercise, healthy eating, stress management– to help manage the symptoms.  But I still have progression.  I don’t think PD will be “cured” in the foreseeable future.  There seem to be an increasing number of factors that are producing this disease in many different forms.  Perhaps the medical community can come to understand that there may be a spectrum of symptoms in this disease process and will develop effective treatment — pharma and other — to mitigate the worse of this.  I still hear neurologists say “I diagnose Parkinson’s based on the patient displaying tremors” and “Parkinson’s patients don’t have pain”.  There is so much the PD community can share to help find beneficial treatment.

      • #20611
        Troy
        Participant

        Dear Dr. C: thank you. You wrote: “I still hear neurologists say “I diagnose Parkinson’s based on the patient displaying tremors” and “Parkinson’s patients don’t have pain”.  There is so much the PD community can share to help find beneficial treatment.” I experienced two years of traveling down rabbit holes because my tremor is “atypical”. But, all of my other symptoms, to include electrical nerve pain (which I think was my first symptom), are all VERY typical. But doctors just couldn’t get past that tremor. I would say “but this is going on, and this is going on” and like clock work, new symptoms would arise every couple of months. But they seemed to think none of it was connected. Finally, my doctor connected all the dots, diagnosed me with EOPD and put me carbi/levo (and Lyrica for the nerve pain). My symptoms have settled down and I feel somewhat human again. I know that living with PD isn’t easy and there’s a long road ahead of me, but at least I have peace of mind when compared to the trauma I experienced for two years of not being (feeling?) listened to. I try to give the benefit of the doubt 🙂

    • #20618
      Russell Dean Boyer
      Participant

      It may be wishful thinking but I believe a cure will be found in that time frame. Whether it will get through the regulatory process in that period is the question. There are so many discoveries being made and so many different approaches being tried that the odds are something will be found.

      As for the pharma question, I may be thought biased since I worked in the industry most of my career. As one person said, there is not a lot of money being made off of existing generics. But even more important than that are two points:                          A. Maybe Amneal Pharmaceuticals is making money off of Rytary but that does not help the profitability of all the other companies investing in research into new products now. They are spending money and if they get nothing back for all the investment they have made, they might be looking for a new job. On the other hand, if they find something better than existing products, they not only might get a bonus but they will look like heroes also.

      B. Some of them have Parkinson’s also, or have relatives and friends who do. They genuinely are motivated to help people. They see the patients and know that people are suffering. Not many are that cynical that they would hide a cure even if they had a profit motive, and as I said above, there isn’t really any way they are going to benefit financially by not selling a better product.

      Ask yourself this. If you or your relative were working or had worked in a pharma company that discovered a cure for PD and buried it, what would you do? If it were me I would scream my head off, and no one could buy me off with a few dollars. I suspect everyone else would do the same. So believe me, everyone working on a promising new therapy is hoping for a breakthrough and working hard to make it happen.

    • #20623
      Dan Montano
      Participant

      I believe the question of “will there be an “effective” Cure for Parkinson’s Disease in the next 5 to 10 years” is highly depended upon the question, “What causes Parkinson’s Disease?” It is very difficult to find a treatment, if you do not know what causes the disease.

      About 5 years ago a new Hypothesis developed stating that those researches believe Parkinson’s Disease is caused by “vascular dysfunction.” New imaging technologies have shown that people suffering with Parkinson’s Disease, have materially diminished blood flows in the area of the brain, which host the dopamine producing neurons.

      FGF-1 is a biological molecule which triggers angiogenesis (the growth of new blood vessels). In animal trials (rodents and monkeys) given Parkinson’s Disease, those animals developed the same movement disorders as humans. Those experimental animals given FGF-1; to trigger new blood vessels growth (angiogenesis) had their Parkinson’s symptoms reverse materially.

      We have submitted our Investigative New Drug application (IND) to the US FDA and that application is waiting for us to provide additional animal data. We also submitted in Mexico at their regulatory body (equivalent to the FDA) and they accept our animal data and in February 2020 gave us permission to proceed on the First in the Human Brain Phase I clinical trial in Mexico. COVID-19 lock downs have delayed the start of that trial until now. We have a pathway forward and I hope we will be dosing humans within 90 days. We do not need volunteers at this time, the Mexican hospital is the leading neurology hospital in Latin America and they have enough volunteers now for our Phase I clinical trial to treat Parkinson’s disease. I hope by the end of this year we will know if the molecule is safe in the human brain and if we see any improvements, that were witness in the monkeys with Parkinson’s Disease.

      Is there a possible treatment which can “effectively” cure Parkinson’s Disease? Ask me in 12 months; after I have seen the human data from this Phase I.

      Dan Montano

    • #20631
      Paul
      Participant

      I am confident I will outlive Parkinson’s Disease! That being said, seven years doesn’t seem realistic to me. There have been several theoretically valid treatment options tested in clinical trials over the past decade or so, and none have proven viable. While I am optimistic about a few new treatment possibilities on the horizon, even if one (or more) of them proves to slow or stop – or cure! – Parkinson’s, there’s no way it would make it through the approval pipeline in less than 10-yrs.

      Just my opinion. Any thoughts?

    • #20632
      Russell Dean Boyer
      Participant

      In response to Paul

      The regulatory process is indeed a major issue. However, there are enough Parkies around that if a viable cure were found I would hope that the pressure from the community could force the FDA to speed up the process on a compassionate basis. And if the EU or some other country took the lead, you might find a lot of airplanes full of twitchy people heading that way.

      And if the same process applied to Alzheimer’s patients (as may be the case with a couple of research approaches under study) then I doubt the FDA would be able to drag their feet.

      But then I am by nature an optimist.

      • #20635
        Paul
        Participant

        Thanks for the response, Russell.

        We’ve seen a lot of technological advances in the last 40-years (give or take): we’ve mapped the human gene code; we’ve made significant advances in ethical stem cell production; we’ve developed *retro-virus* technology to make it a realistic, cost-efficient delivery technology… So, why is the gold standard of PD treatment over 50-years old?

        Although I am convinced I will outlive PD, I am losing confidence that an effective treatment (or cure) will be developed and approved before it does much more significant damage. So far, although my neurologist says I’m “killing it!’, fighting PD for roughly ten years is tiring. Simply said, PD is RELENTLESS (as I’m sure you know). Some relief in the next ten years would be *great*, but I don’t see it happening in that time frame.

    • #20634
      Kathy Bettles
      Participant

      This disease is being studied world wide. I continue to hold out hope for one of the many stem cell studies. They seem to finally being tested in a small amount of humans. Dan Montano is finding a way to proceed with his research into what sounds like a reasonable therapy and so are many others. My HWP is having help at managing his symptoms with mannitol. There is so much happening right now. I am so thankful for this website that helps us keep up with current PD news without being overwhelmed. I refuse to believe we should give up.

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