MPNforum Magazine

 

This TSR issue of MPNforum is brought to you courtesy of Mary Cotter (Cotter Careers) and Carlos Garces. Their monthly donations helped fund the Internet and publication costs of the issue.  Please consider joining them with a  $5 or $10 monthly donation to preserve the wealth of material in the MPNforum archives for new patients and those who cannot now afford to contribute.  Thank you.

Our time is coming…Today’s headline: “CRISPR fixes blood disorders.” 

Five years ago at ASH MPN specialists uniting under the MPNRF and the MPN Genetics patient coalition attended the first genetic engineering meeting devoted to finding a gene editing cure for MPNs.   

In 2020, a year plagued with death and so many suffering the effects of  lockdown, recession and isolation,  one bright light is how fast gene editing produced the covid vaccine.  Another is the case of Victoria Gray, the first person cured of a blood disorder (sickle-cell) using CRISPR. 

It’s good to look back to realize how fast change can come, how much science and good will can achieve.

2021 brings promise, genetic breakthroughs in deadly diseases, an end to the pandemic, new leadership coming together to face the massive problems of our time – disease, climate, poverty, racism. The long darkness is beginning to lift.  Happy New Year!

What’s up with myMPNteam? 

We should be proud.  The sudden and massively financed interest in providing MPN patients and professionals with up to date information is staggering.  Gone are the days MPNs were an ignored backwater of the hematologic universe.  Today we’re rock stars.

Considering the massive screen time triggered by the covid pandemic  it would be hard to miss the myMPNteam marketing blitz.

So what’s up? Who or what is this organization suddenly so concerned about us?  Why is myMPNteam serving up tasty bits of MPN advice in a slick easy-to-read format, popping up on our social media, eager for us to sign its dance card?s.

 In its own words, here’s myMPNteam:

“We are an independent, venture-capital backed startup (called MyHealthTeams) based in San Francisco, working hard on a mission we love. All of the features on the site are designed with one goal in mind; to connect you with others who have been in your shoes.”

Ah, venture-capital backed.   Sort of says it all doesn’t it. The mission they love however is not particularly MPN oriented. Or even solely designed to connect us with others wearing our size 11s. They have spawned  many other home teams they refer to as chronic diseases. 

Neither of the co-founders — Eric Peacock, CEO and Mary Ray —  has a medical or MPN background or seemingly an abiding MPN interest.  They are business oriented folks.and their backers are Venture Capitalists Adams Street Partners, 500 Startups, HealthTech Capital, Sand Hill Angels, CVS Health, etc.  Total funding is reported at $26.8 million  Could be more. We never checked.  

 The service is free to patients who are encouraged to sign up and provide significant personal information and revenues for this MPN offshoot of MyHealthTeams are significant.  Back in May, the company’s first Paycheck Protection Loan protecting 46 jobs was for $736,308.   Payroll has grown since then. We could dig into the numbers but their business model seems clear enough.  Provide a service to patients and monetize the data.  Attractive enough for Venture Capitalists.

That’s them.  What about us? What do they plan to do with our data?

Who sees your information?

The answer to that question is one reason myMPNteam is not likely to be my MPN team. 

“On occasion,” reads their privacy notice,  “myMPNteam will inform you of upcoming clinical trials or services in your area that may be relevant to your diagnosis. However, information that can identify you, such as your name or email address, will NEVER be shared with partners of any kind without your permission.”  Fair enough. 

While some of the information on the Site is available without registration, active participation on the Site, requires you to register as a member. “As part of the registration process you will be authorizing myMPNteam the use of your personal and health information.” … myMPNteam will only use Registration Information in accordance with its Privacy Policy.”  

There are two other reasons — at least — not to feel the information you provide when you register is any more secure than Federal files in the sights of Russian hackers.  Make it three. 

(1) myMPNteam acknowledges it may link to other sites governed by other privacy policies;

(2) myMPNteam is supported by 9 out of 10 of the world’s leading pharmaceutical firms, and 19 other biopharma and healthcare companies that “share MyHealthTeams’ focus on addressing unmet patient needs;” 

So Big Pharma and myMPNteam are focused on my unmet needs…and not focused on profit? A little hard to believe since we never met. In my experience unmet needs for drug companies usually means the perceived  need for one of their drugs in the pipeline or on the market.

As an MPN patient one of my needs is trusting medical advice.  Included in that crew of myMPNteam supporters — of special interest to MPN patients — is Incyte’s deep pockets backer, Novartis. The aggressive marketing of Jakafi and downplaying of that drug’s serious side effects, has pretty much blown any possibility of blind trust.

And (3) myMPNteam’s data security rating is nothing to get giddy about. In fact, according to the San Francisco rating service Craft the MyHealthTeams cyber security rating is D,  which means it’s more than 5 times more likely to get hacked than firms in the A crowd.

Finally. there’s an even stronger reason to avoid providing my personal and health data to myMPNteam.

What they’re promising their partners can be a problem for MPN patients. They’re promising to help partners (Big Pharma and other Healthcare companies) reach diagnosed patients {“Extremely high audience quality”); provide competitive insights into patients; and they’re offering their partners “Clinical Trial Education & Promotion.” That’s something we should be getting from our docs not some commercial outfit supported by drug companies

I never registered, just lurked around the outside of the site, tapping informative links. Their take on MPN phenotypes seems accurate enough. If you click on their RESOURCES link, however,  don’t expect to find actual resources. Just vanilla summaries from myMPNteams’s own authors and no links at all to any sources of reliable MPN information.

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And then there’s MPN HUB… (pretty much) a Horse of a Different Color

Different, in serious ways, as heavyweight MPN specialists are involved providing expert opinion on these pages.  Different too as the MPN Hub target audience isn’t primarily the MPN patient but the professional medical and research communities. The “(pretty much)” is needed to qualify one similarity. Here is a list of the supporting, founding donors to the HUB… the usual suspects with the usual motives. And since clinical trials — the lifeblood of the pharmaceutical industry — is highlighted on the MPN Hub site, negotiating those pages requires some care.

 

That said, there’s a lot to like about MPN Hub. A project of the four year old London-based private limited company, Scientific Education Support (SES) , MPN Hub is only the latest of the firm’s several collaborative open source Hubs that include sites for AML, GVHD, Lymphoma and Multiple Myeloma.

It would be hard to argue with MPN Hub’s vision “For every treatment team and researcher to have instant access to expert opinions and the latest evidence-based information in MPN, to aid in treatment decisions and improve the lives of patients with MPN globally.”

Pretty lofty. And even though the SES website and filing statements are too skimpy to draw any firm conclusions, the MPN Hub pages are rock solid. The site features Reports flowing out of current international meetings, recently published papers and opinions all clearly useful to medical personnel caring for MPN patients. MPN patients will find familiar faces delivering video opinions on developments.

Well worth checking out; http://www.mpn-hub.com.

Happy New Year!