Interview with Former Pharmaceutical Executive Turned Patient Advocate David Ashford Jones

Following a successful 25 year career in the pharmaceutical industry where he held senior roles, David was diagnosed with Parkinson’s disease in 2010.

Told by his wife that he has a moral duty to do something, David determined to change the treatment options for people with PD. Towards that end, David founded WellumPhoenix with Ken Kubota.

The goal is simple “to solve the research funding crisis that blights the search for cures by making medicines so that every pill taken by a person with Parkinson’s contributes to Parkinson’s research.”

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The following has been paraphrased from an interview with David Ashford Jones on May 10th, 2018.

(Click above for the full audio version or here for a downloadable link)

What do you think are the biggest misconceptions people have about how the pharmaceutical industry works?

In general, the common conspiracy I hear from people is that the industry doesn’t want to find a cure. In my experience, everyone in the industry wants cures, but it does have to come at the right premium. That is just a function of the fact that we live in a capitalist society and drug companies have to get a return on their investments, so they have to look at what is good for the company when they invest in trials. That is where the conflict often comes from for people who get frustrated seeing these companies either withdrawing from the market or charging ridiculous sums for drugs.

One example is ropinirole (a dopamine agonist used to treat PD), which has made GlaxoSmithKline about 2.4 billion dollars. That sounds like an enormous amount, but it cost around 1.2 billion to create the drug, and adding in 15 years of marketing, they probably haven’t made much money from it. The figures are astronomical and lead people to think of fat cats that don’t want to help, I think they are trying to help but are challenged by market forces, and at the moment, Parkinson’s is not an attractive market.

Frustrations mount in the patient community over the belief that their interests are not accounted for in clinical trials, what is the perspective from pharma on this?

I think there are two aspects of this, the pharmaceutical and the research, and both arguably work against the best interest of the patients when it comes to trial design. For the pharmaceutical industry, trials equal data which equals a license. If you’ve spent 1.2 billion dollars creating a drug, you want to try it on a population that it will work for. So they lean towards safe studies that also have economic benefit. Likewise, researchers also look for patients that neatly fit the trial protocols and enable them to push forward their science.

Neither perspective has the patient as their focus. But, I also think we patients have not done enough to help ourselves. I think we need to stand up more and make it known what we want. Do we really need five different studies on dyskinesia (involuntary movements)? Perhaps it would be more beneficial to take some of those studies and move them to studying pain or freezing.

In your 25 years in pharma, what changes did you see in how patients are perceived by the industry?

When I first came into the industry I don’t think patients were thought of at all. Then as people realized patients could help with market access this started to change. The drug, Betaferon, for Multiple Sclerosis was my first exposure to patient power here in the UK. Companies knew patient’s voices would help gain market access, but any engagement was on a very simplistic basis and focused on the gains for the companies

Since then I have seen things move more towards ‘patient centricity’, which is now a phrase that most companies will have written somewhere in their annual report. They need to do more but there are steps being taken in the right direction. There is a patient-leader at AstraZeneca who is at a very senior global level and is driving patient interest in the company. There are other companies now bench-marking patient engagements across the industry to progress things forward.

But things are still not where they need to be. I recently did some consulting for an oncology company that deals with terminal cancers. These patients get a diagnosis telling them they’ve got 3-6 months left to live, and yet the company was looking for ways that those patients could help them sell their drug. I don’t think many people who get such a diagnosis are worried about a company’s market access. It shows how easy it is for the people in pharma to lose perspective when under pressure to deliver results

Do you think our failure to properly treat neurological disorders is due more to the way the pharma industry works or how difficult the science is?

I think we have wasted a lot of time in Parkinson’s because we didn’t address what really needed to be addressed. Though there are also some big scientific challenges. For example, when I did my degree in pharmacology we only knew of one dopamine receptor, there are now five. It seems the more we know the less we understand.

If you look at Parkinson’s disease, there is not enough money going to basic research. This stems from not matching other diseases markets for size, growth and value. The answer must be making the market more attractive. Give higher prices, longer patent protection and make Parkinson’s a disease worth treating.

But at the same time there is paucity in our appetite to invest more in the basic science and learn more about the disease.

Then there is also the matter of the registration of drugs, which require successful matching of a phase 3 clinical trial to a primary end point. Considering the results of the exenatide study. I was a participant in it and I derived substantial benefit in my motor scores. But not all patients responded therefore bringing down the average for the whole group. This may significantly undervalue the effect of the drug within a cohort of patients who are responders. Neurological conditions are very heterogeneous, yet our studies rely on getting a single end point. That is important for our scientific understanding of the disease, but if you really want to know if exenatide works we need to just give it to ten thousands patients and monitor each of them to determine what type of person with Parkinson’s the drug would be best suited for.

How has your personal move to the other side of the table changed your outlook on pharma?

For me it has just been the recognition that pharma does not really understand the patients or what they need. Since my diagnosis I have come to understand that people don’t really understand me as a patient and what my challenges are. To get on to a certain drug I had to get to central London at 9am from an hour and a half away without any medication in my system. But I rely on the drugs I take to stop myself from freezing and enable me to actually make it to Central London. If I were to go back I would say I was too focused on getting my message across and not focused on the patients. That was a mea culpa moment for me.

How do you hope to change the equation through WellumPhoenix?

In a nutshell, I am hoping that it generates enough money to make us one of the biggest funders of PD research within the next five years. I would also like it to become a platform that allows us to change the perception of Parkinson’s. The company is created by people with Parkinson’s, for people with Parkinson’s. We can demonstrate that life goes on after your diagnosis. I think too often people get Parkinson’s and think that’s it, I want to show them that with the right attitude you can still do some tremendous things and life can take you somewhere where you didn’t expect it.

10 years from now, where do you hope WellumPhoenix is?

I’ll come back to my initial concept, the idea was to produce branded generic drugs to sell to people with Parkinson’s and put that money back into research. Some of the challenges we have had is that we don’t want to go to venture capitalists because they just want to roll the company up and sell it. We want to become a predictable, consistent source of funds for research to allow scientists to do the kind of long-term studies needed rather than just relying on the three year grants they get now. Beyond that, I would hope that we get to the point where we put ourselves out of business.

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