A very public letter to my daughter, for her 17th birthday

Dear Rose:

You are about to turn 17 years old. As I think about that, I realize how happy I am to be your father. It is such joy to have watched you become who you are: a scholar, a skilled equestrienne, a person of insight and wit, a caring friend to others, and – yes – a young woman who lives with cystic fibrosis.

We have come so far from the days of Rose the failure-to-thrive baby, literally saved from starvation at five months of age when a medical resident thought to give you a sweat test. You are most assuredly not failing to thrive now.

But there is a part of me that is very sad as your birthday approaches.

You are doing a good job of taking care of yourself – and, as you know, it is no easy thing because your CF is with you all the time, usually claiming well over an hour every day for physical therapy, inhaled medication, and all kinds of other annoyances. There have been challenges and setbacks – and, you probably remember, during one such time over the summer you said: “I’m doing the best I can, Dad, but let’s face it – I’m gonna die of this eventually.”

My heart ached to hear you say that. “You’re wrong,” I blurted out, in the moment. I still think so. Here is why.

This is not a matter of blind faith or hope. It’s a matter of science – and, in particular, of extrapolating the measurable scientific progress that has been achieved, not just over the 70 years since CF was first identified but within your relatively brief lifetime itself.

Not long after you were diagnosed, we found out that you have unusual CF mutations: the one known as 621 + 1G > T on your mother’s side and N1303K on your dad’s. (Most CFers, as you know, have at least one copy of a mutation known as 508Fdelta). Back in 2002, this didn’t matter much; the latest breakthroughs were Pulmozyme and Tobi – drugs that help ward off the effects of CF on your lungs.

Then the Cystic Fibrosis Foundation (CFF) and its partners in the pharmaceutical industry hit paydirt – in the form of three so-called “modulator” drugs (Kalydeco, Orkambi and Symdeko) that treat the underlying cause of the disease: the failure of a particular protein to do its job in each of your cells, to allow chloride (and thus salt water) to pass in and out of those cells.

Unfortunately for us, those modulator drugs have so far helped mostly just people with at least one copy of the 508Fdelta mutation. You, it turns out, are something of a poster child for what has become known in the CF world as “rare and nonsense” mutations. And in your lifetime, cutting-edge CF care turns on what specific CF mutations are in your personal genome.

A piece of good news is that the CFF’s drug development partnerships – referred to by the Foundation as “venture philanthropy” – were not just a breakthrough when it comes to how a disease-fighting charity can meet its goals. With respect to the modulators, it was literally paydirt: In 2014, the CFF cashed out its rights to future royalty payments from the drugs and pocketed a cool $3.3 billion.

What is the CFF doing with all that money? In large part, the Foundation is figuring out how to cure CF in people with rare and nonsense mutations. That’s you.

In particular, three years ago, the CF Foundation did something truly radical. It took matters into its own hands.

It turns out that what venture philanthropy did for drug development the CFF Therapeutics Lab does for research breakthroughs at earlier stages in the process. I am talking about things like genetically altered stem cells, or chemical compounds that can suppress the effect of nonsense mutations, or new assays (systems for testing the effects of new chemical compounds) other innovations that fall under the category of “intellectual property.” When that intellectual property belongs to the CF Foundation, because it was created at the Foundation’s own lab, the CFF can act on those breakthroughs with the kind of speed and efficiency you need as a person with CF.

Well, the CFF figured it could just give it away – to drug companies and other enterprises willing to bring these innovations to market – if the Foundation opened its own lab and developed the intellectual property itself. Thus was created the CFF Therapeutics Lab in Lexington, Massachusetts.

Earlier this year, soon after finding out that this CFFT Lab is ground zero for doing something about people with nonsense and rare mutations, I discovered that every fall the CFF does a tour of the facility for key people in the CF community. I don’t really think of myself as such a key person, but when the invitation came I did not hesitate. I just put the date on my calendar.

Boy am I glad I did that. My visit to the CFFT Lab on October 1 was like a free and effortless trip to the summit of Mount Everest. Much of what I saw was unfathomable – what do I know about microbiology or genetics, after all -- but everything about the vista was breathtaking.

Even though I skipped out of math when calculus set in years ago, and figured that English majors didn’t need college-level microbiology, the benefits of the technology being employed at the CFFT Lab were obvious. For example, there’s a $400,000 machine that uses robotics to process minute quantities of chemical compounds. When you can test 10,000 such compounds a week – “high throughput screening” is the catch-phrase – success is inevitable for the same reason that 10,000 monkeys typing will eventually produce a Shakespeare play.

Likewise, just a couple of benches away, there is genetic sequencing technology that can plow through the human genome many times faster than the 15 years it took to map the genome for the first time. This will pave the way for using gene editing, or gene therapy, to restore the effective functioning of that defective cellular protein. Just a few feet away from all that is a whole lab that is using tissue from CF lungs (swapped out via lung transplants) to figure out if implanting healthy “stem cells” – or removing lung cells, repairing them, and replacing them – will turn CF lungs into healthy lungs.

Those are just some highlights I was able to grasp as a non-scientist. As a liberal artist and CF dad, what really blew me away was the people who work in the CFFT Lab.

My new favorite friend at the CFFT Lab is Dr. Hillary Valley, a 2006 graduate of Concord High School – which is just a few feet away from my office in New Hampshire’s capital. You and I, Rose, were already five years into our shared CF odyssey when Hillary was heading off for her freshman year at the University of Wisconsin – and now she’s a PhD microbiologist who works to cure CF via gene editing. Like the other young scientists whom she works alongside at the lab in Lexington, she was drawn to the CF Foundation because of the resources, the energy, and the creativity the organization brings to its endeavors.

Likewise there was Dr. Jed Mahoney, who leads the stem cell biology group at the CFFT Lab. Jed went all rapturous as he was showing off color images of lung cells he’s been messing with. Like his colleague Hillary, he was lured away from other endeavors and onto the payroll of the CFFT Lab because he resonates with the Foundation’s energy, passion and the commitment. Who doesn’t want to play for the team that is headed to the World Series?

When you ask these young scientists why they have dedicated themselves to curing cystic fibrosis they always say: “It’s the community.” They’re talking about us, the CF families. I think we owe them everything we can do to prove they made the right choice for the right reasons, because there are any number of other things these talented PhDs could be doing with their scientific acumen.

We owe others as well. I owe people like the sportswriter Frank Deford, who held his little girl’s hand as she died of CF in 1980 – and then spent the rest of his own life helping to lead the CF Foundation. You, I think, owe people like Rosemary Quigley. She made it to 33 before dying of cystic fibrosis in 2004.

Maybe you had a life like Rosemary’s in mind when you mused that you will inevitably die of CF – she, after all, graduated from law school, clerked for a federal appeals judge in Maine, and became an accomplished medical ethicist. But consider what Rosemary herself wrote about her situation not too long before her death: “I am discouraged by people who confer admiration on my most basic accomplishments; I seek supporters who never think I have done too much, who will push me further for as long as possible. I focus my spirit to outlast my withering body.”

Reading stuff like that, as the dad of a little girl with CF, I assumed that when you got old enough to understand your situation fully you would see it as I see it. I thought you would want to lean into this CF thing, not because you are lucky to have this disease – it is most assuredly not a blessing – but because fate has tethered us to one of the noblest and most successful human endeavors in history.

When you made clear that you didn’t automatically embrace my boundless and evidence-based optimism, I felt miserable for a few days. Then I sought help. I’ve made some very smart friends in the CF community, among them my fellow members of the board of our chapter of the CF Foundation.  I reached out for their advice.

One board colleague, a young woman with CF who is just a few years older than you, said she likes feeling connected to “the big march to victory” but, she added, on her own behalf as well as yours: “A lot of times we are just tired.” 

Another board colleague – a mother as well as a daughter – had this recommendation:

 “Continue to relay to her your excitement about research and opportunity and leave room for her to share that she needs to view this skeptically and be prepared for it not to work.  You are a dad whose own biology contributed to her having this disease, so you need to believe that science and your efforts to aid it will have an impact. She is a kid who knows that despite science she will continue to suffer serious health setbacks and that her life may be cut short by CF.  Your experiences of this disease are different and that is just the way it is going to be.” 

Okay.  It’s easier to be a militant CF heterozygote like me, with N1303K on his vanity license plate and the CFF pin on his lapel, than it is to live with CF every day. I get that. But I beg you to see what I see – a trajectory of scientific progress that means you are likely to outlive your dad by many years and ultimately die of something other than cystic fibrosis.

Yes you will get tired.  But when you are tired, we will lift you up.  Not just me, but all of the people, living or dead, whose work and thoughts I have mentioned here.

Please try live your life with the understanding that you might not have to die of this disease. It has been my good fortune to learn about and sometimes to meet so many remarkable people who have been connected to cystic fibrosis. But none have been as remarkable as you -- and I so look forward to many, many more of your birthdays.

 Love,

Your Dad

[P.S. to my friends, and Rose’s: If you really and truly read this whole thing, you might take pleasure in connecting with our family’s CF story by donating to our Annual Fund campaign that raises money for the CF Foundation. Just follow this link if such an opportunity is of interest. And thank you to my friend Hugh Montgomery for the lovely picture of me and Rose.]

Sixty Fibrosis: Thoughts About July 24, 2018

Frankly, turning 60 – as I do on July 24, 2018 – does not feel like a happy occasion.

There’s nothing wrong with feeling old.  But at 60 you really do have to shed a self-image built around ingenuousness – the notion that you’re perpetually up-and-coming,  a source of new energy and ideas, a person whose best days are still in the future.  I am sorry to lose that.

When I turned 50, I felt relief.  I was so sure my second half-century would be the easier one, thanks to the solid foundation I had built in the first.  How completely wrong I was!  As recently as last week, I found myself throwing some of my most cherished ideals and hopes over the rail, in sorrow.

Where do you go at such a juncture?  I go to my heroes.

In this particular case, I went to Washington, D.C. where, on June 27, I got to listen to a panel discussion among four of them – the chief executive officer of the Cystic Fibrosis Foundation and three of his key people.  The topic was the latest scientific progress in the treatment of CF.

If you’re rolling your eyes – especially because you’ve probably heard similar sentiments from me before – please be reassured.  I still have not shed my cynical world view, the perspective that makes me inherently skeptical about big, mainstream organizations like this one.

I’ve been struggling with that perspective ever since the day in 2002 when the doctors told me that my baby daughter had cystic fibrosis.  That baby daughter will be 17 in a few months, and she’s also a hero.  An accomplished equestrienne and scholar, she makes having CF look like it’s just another part of the program, even when it lands you in solitary confinement for a month at a hospital far from home, as happened last year.

Rose’s brother Felix is also a hero.  He traveled with me to Washington last month to lobby on behalf of the CF Foundation.  Before we left, we stopped by New Hampshire Public Radio for an interview.  He calmly described his ambition to become a major league ballplayer, pointed out that major leaguers make lots of money, and rattled off that as a result he’d be donating at least half of his salary to the CF Foundation.  (You can hear the results of this interview about halfway through the July 20 edition of Word of Mouth.)

Felix also noted how much CF affects all of Rose’s family, and noted that until he turned 10 he had failed to grasp that not every sister of every kid lives with CF and puts up with its demands.  I’d call that the heroism of the routine – because, in our family, Rose’s CF regimen is referred to as her “routine.”

Who does not want to feel a part of something bigger than ourselves?  That’s what we get via our involvement with the CF Foundation.

Cystic fibrosis was discovered and named in 1938 by Dorothy Hansine Andersen, the chain-smoking, free-living lesbian pathologist from Columbia-Presbyterian (and graduate of St. Johnsbury Academy in Vermont).  Before Andersen, some babies were born with salty skin and didn’t live long – it was a mystery.

That mystery has morphed and blossomed into the greatest story in medicine.  I love feeling connected to people like Paul di Sant’Agnese (who invested the test for CF), Leroy Matthews (who essentially invented Rose’s “routine”), Warren Warwick (who invented the “vest” machine Rose uses for physical therapy), Francis Collins (who led the team that identified the CF gene, and now runs the National Institutes of Health), Frank Deford (sportswriter and gold-star CF dad), Rosemary Quigley (medical ethicist and CF patient), and others I can name if you’re interested.

It’s the greatest story in medicine for the reasons cited by Atul Gawande in his 2004 New Yorker article about CF, called “The Bell Curve.”  Among other things, the essay describes Dr. Warwick at work, with one teenage patient in particular – 17-year old Janelle.  Here’s a key sample:

“Let’s look at the numbers,” he said to me, ignoring Janelle. He went to a little blackboard he had on the wall. It appeared to be well used. “A person’s daily risk of getting a bad lung illness with CF is 0.5 per cent.” He wrote the number down. Janelle rolled her eyes. She began tapping her foot. “The daily risk of getting a bad lung illness with CF plus treatment is 0.05 per cent,” he went on, and he wrote that number down. “So when you experiment you’re looking at the difference between a 99.95-per-cent chance of staying well and a 99.5-per-cent chance of staying well. Seems hardly any difference, right? On any given day, you have basically a one-hundred-per-cent chance of being well. But”—he paused and took a step toward me—“it is a big difference.” He chalked out the calculations. “Sum it up over a year, and it is the difference between an eighty-three-per-cent chance of making it through 2004 without getting sick and only a sixteen-per-cent chance.”

He turned to Janelle. “How do you stay well all your life? How do you become a geriatric patient?” he asked her. Her foot finally stopped tapping. “I can’t promise you anything. I can only tell you the odds.”

In this short speech was the core of Warwick’s world view. He believed that excellence came from seeing, on a daily basis, the difference between being 99.5-per-cent successful and being 99.95-per-cent successful. Many activities are like that, of course: catching fly balls, manufacturing microchips, delivering overnight packages. Medicine’s only distinction is that lives are lost in those slim margins.

Exactly.

Dr. Warwick died in 2016, but his salient qualities – identified in the Gawande article as focus, aggressiveness, and inventiveness – live on in the CF doctors and researchers I listened to in June.  Much of what they described had to do with the CF Foundation’s “nonsense and rare mutations” initiative.

For entirely selfish reasons, this is of the keenest importance to me.  Rose has nonsense and rare mutations.  This means the miracle CF drugs you may have been reading about – Kalydeco, Orkambi, Symdeco – do not help Rose.  That’s true of, at most, 10 percent of CF patients – a minority of people within what is already an orphan disease.

Now maybe you can see why I am inspired by people who care deeply about the difference between 99.5 percent success and 99.95 percent.  These are human beings, afflicted with the same flaws, ambitions and self-delusions that hobble all of us.  But their struggle is among the noblest ones I have seen, and it one in which each of my two kids is also playing a meaningful part.  It leaves me convinced, at age 60, that each of them will attend my funeral, and I will have to go to neither of theirs.

So . . . if you want to send me Facebook greatings on the occasion of a milestone birthday, please do so.  But if you really want a piece of this – if you want to do something that will make me feel like this milestone is worthy of celebration – go here and join me in supporting the CF Foundation.  Even a token contribution will inspire me.

Apologies to the CF Foundation for stealing their “65 Roses” meme, and varying it a bit.  My kids will cringe, and you might laugh, but July 24, 2018 is definitely “60 Fibrosis” day for me.

 

 

 

A Love Letter to the Sacramento Natural Foods Co-op

Sacramento’s food co-op has long occupied a place in my heart and imagination, even though I have only visited the city once and am most assuredly not a member.  I befriended several directors of the Sacramento Natural Foods Cooperative years ago, and that led me to become impressed by the passionate commitment to the consumer cooperative model in California’s capital city.

Evidence of that commitment is on prime display this month as members of the Sacramento Co-op vote on an ambitious effort by the Board of Directors.  The Board has taken on the herculean task of trying to rewrite the co-op’s bylaws – basically, the constitution of the Sacramento Natural Foods Co-op.  And a small but committed group of co-op members has taken on the David v. Goliath task of trying to defeat the proposal.

Let’s get this out of the way first:  The work that went into the proposed new bylaws, and the energy the opponents are devoting to defeating the proposal, are both signs of cooperative health and vibrancy.  As cooperators, we often extoll the virtues of our democracy – but sometimes we forget that real democracy involves disagreement.  In fact, one could say that the more passionate the disagreement gets, the more certain it is that the co-op in question is thriving.  Nobody argues over a co-op that is irrelevant to its community.

And let’s get this out of the way second:  I’m an outsider, and can be written off as such.  The first Cooperative Principle is autonomy and independence, and that means the world of cooperators outside of Sacramento ought to let Sacramentans run their co-op.

On the other hand, I’m a lawyer who specializes in (among other things) cooperatives – and, as a longtime director of my co-op in New England, I have seen similar controversies roil through cooperative grocery establishments across the continental U.S. in the past few years.  I am a fan of peer-to-peer networking among co-op directors – and, so, in that spirit, I offer up some comments.

I think the members of the Sacramento Natural Foods Co-op should send their Board back to the drawing board – telling the directors, in effect, that their proposal is a fine first effort that needs a bit more work before being enshrined as the co-op’s governing document.

My reasons, though, are somewhat different than those given by the Friends of the Co-op group that has coalesced to defeat the bylaws proposal.  Here’s my list of concerns:

1.      Term Limits: They are profoundly undemocratic.  Yes, some directors overstay their welcome.  Yes, incumbents can be hard to defeat.  But if you believe in democracy, why would you tell the members that their most experienced directors are ineligible to be chosen by the electorate?  This particular term limits proposal is especially troubling because it appears to impose a lifetime cap of ten years – a director cannot get around the limit by leaving the Board and then returning.

2.     Diminishing the Board: It is no mere cosmetic change to decide, as these new bylaws would, that the officers of the Board are no longer the officers of the corporation (i.e., the president, vice, president, treasurer and secretary).  It is an essential feature of the cooperative identity that the officers of the organization are directors who are elected from among the member-owners.  Rejiggering the organization so that the officers of the Board become the chairperson, vice chairperson, etc., while at the same time reconfiguring the general manager’s title to “CEO,” is the sort of cultural shift that undermines the organization’s cooperative identity.  Every food co-op is sometimes tempted to imitate the investor-owned monoliths with which we compete.  Democratic member control is a feature and not a bug of co-ops – it deserves to be honored and celebrated.

3.     Outside Investors:  Nothing distinguishes a cooperative more decisively from other kinds of enterprises than the fundamental notion that a co-op is owned by its users (i.e., in the parlance of cooperative law, its patrons).  At every other kind of business, there are investors who devote their capital to the organization because they want to maximize their profits.  So, allowing non-members to buy preferred shares in the Sacramento Natural Food Co-op would occur at the expense of the cooperative soul of the organization.  It’s true that non-member owners of preferred shares would not vote – that’s why the idea is legal for a co-op – but the existence of a growing number of non-member investors can only serve to dilute the Co-op’s devotion to the interests of its members.  I have a lot of sympathy for this proposal – I know how hard it is for consumer co-ops to raise capital – but this particular bargain is too Faustian for me.

4.     Secret Board Meetings: There is a reason why elected legislative bodies like the U.S. Congress and the California Legislature must transact their business in person – the give-and-take of democracy requires people to be in the room together, communicating with each other via all available senses.  It may be, eventually, that electronic meeting technologies will arise that will be even better than in-person meetings because the technologies would allow even more complete participation and transparency.  But a blanket authorization telephonic meetings, and executive (closed) sessions for not just the usual stuff but for “other” unspecified “matters” (see section 2.10), involves too much mischief potential.  Even a Board resolutely dedicated to the Cooperative Values and Principles risks allowing cynicism and mistrust to proliferate by finding reasons to operate in secret.

5.     Unjustifiable expulsion:  Currently, the bylaws provide (in section 5.03) that the Board may expel a member of the co-op for “(1) having failed to comply with the Bylaws, rules or regulations of the Cooperative; (2) having failed to patronize the Cooperative during the immediately preceding fiscal year of the Cooperative in a minimum amount to be set by the Board; (3) being delinquent on the payment of their fair share for one calendar year or more; or (4) any other justifiable reason.”  The proposed bylaws (section 607) would streamline this to three possible bases for expulsion:  “(a) having failed to comply with the Bylaws, rules or regulations of the Cooperative; (b) having failed to comply with the Membership contract; or (c) any other reason.”  In reality, the co-op needs only ground (a) as a basis for expulsion – anything else is an invitation to arbitrary exclusion.  The transition from “any other justifiable reason” to “any other reason” is especially troubling because it can’t be read as anything other than authorizing completely arbitrary exclusion.  It’s an ominous step if you truly believe in the Cooperative Principle of voluntary and open membership.

The Friends of the Co-op group has used its Facebook page to level some pointed criticisms at the Board for the process it has used to present the proposed new bylaws to the membership.  I find most of that discussion unhelpful, and even harmful when it veers into questioning the motives of those who have labored to craft the proposal.  However, I do emphatically part company with the Board on one procedural tactic:  the lack of a thorough, line-by line comparison of the old bylaws with the new.

The Board’s “FAQ” document has this to say about the lack of a redline comparison:  “The intent has been to retain the values and spirit of the cooperative in the redraft, yet to allow the board to forward the best document possible. In order to achieve the purposes needed or of clear value, as well as keep the document readable, the new set of bylaws was written from scratch. In fact, if you put both documents into Word and tell it to produce a redline, it simply crosses out the old set in its entirety, and replaces them with the new set. The current bylaws are available on the Co-op’s website.”

This is singularly unpersuasive.  The fact that Microsoft Word does not readily spit out a comparison of the two documents is not an excuse for failing to provide the electorate with a full accounting of precisely what they are being asked to change.  The U.S. Constitution was a complete rewrite of the Articles of Confederation, but those who gathered in 1789 to craft new national bylaws surely took the time to explain to the states – and thus the public generally -- the details of what they were doing.  The members of the Sacramento Natural Foods Co-op deserve no less from the framers of their proposed ‘constitution.’

The members of this fabulous California cooperative owe their Board of Directors a debt of gratitude for all of the work and insight the Board has devoted to redrafting the bylaws.  The directors, in turn, owe the members still more work because this edition is not ready for ratification.  Even the U.S. Constitution required the addition of the Bill of Rights in order to be truly worthy of enshrinement as a binding governance document.

Why I am running for reelection to the board of the Co-op

At the end of his first inaugural address in 2009, President Obama declared: “Let it be said by our children’s children that when we were tested, we refused to let this journey end, that we did not turn back nor did we falter; and with eyes fixed on the horizon . . . we carried forth that great gift of freedom and delivered it safely to future generations.”

That’s why I am seeking reelection to the Board of the Hanover Consumer Cooperative Society.  Particularly for the benefit of the cynics out there, let me explain.

Eighty-two years ago, a group of faculty families from Dartmouth College got together and formed the Hanover Consumers’ Club – and, within a year, their club had matured into something worthy of formal incorporation as a consumer cooperative.

What those folks started, so they could get citrus fruit and other foods that were otherwise unavailable in rural New Hampshire, matured and grew – thanks to their hard work and the dedication of those who followed – into one of the most important business enterprises in the Upper Valley.

The sheer size of the Co-op – some 400 employees, more than $70 million a year in sales, four stores in two states, the fact that it’s the nation’s second biggest cooperative grocer – is only the second most important part of the story.  The most important thing is the values the Co-op stands for – “self-help, self-responsibility, democracy, equality, equity and solidarity,” to quote the International Cooperative Alliance (ICA).

“In the tradition of their founders, cooperative  members believe in the ethical values of honesty, openness, social responsibility and caring for others,” continues the ICA’s recitation of values and principles.

These are not merely words on the page.  The Co-op really does these things, in hundreds of ways, both big and small, obvious and subtle. 

In our community, we have lots of nonprofits and government agencies that are likewise dedicated to such virtues.  But it is the rarest of things to find a business enterprise – and a big one at that – which is likewise so dedicated.

There are two other food co-ops in New Hampshire, and four “start-ups” hoping to open in the future.  But the Upper Valley is lucky enough to have a big and thriving Co-op that is very much a going concern – and, so, is our responsibility to lift up the Co-op, carry it forward, and deliver it safely to future generations.

When I first joined the Board of the Co-op in 2003, and even when I left the Board a decade letter, I felt little doubt of our success.  The Co-op seemed to have an uncontested share of the region’s grocery market.  Yes, there was competition and there were challenges, but I was sure the Co-op was so firmly rooted in our community that its existence would be perpetual.

Today, I am not so sure.

This is not the Co-op’s fault, not even a little bit.  To the contrary, our cooperative is as robust as ever.

In 2016, there was a successful transition from the administration of longtime General Manager Terry Appleby to new General Manager Ed Fox.  Ed was a fabulous choice, he has been thriving in his job, and the team he has assembled of smart grocers and cooperative thinkers is building successfully on Terry’s legacy.

The Board has likewise entered a new era.  A period of rancor set in, just after I left in 2013, and for two or three years Board meetings were the focal point of member unrest.  Thanks, though, to “change” elections of the proverbial sort in 2015 and 2016, there is a new climate of good faith and cooperative spirit on the Board.

So why am I uncertain about the Co-op’s future?  Because there are ominous signs of change in the grocery industry.  The profit-maximizing monoliths in the business – companies like Wal-Mart and Amazon (which recently bought the Whole Foods chain) – believe that in the future we will acquire our groceries by visiting a web site and then receiving deliveries from Uber drivers or UPS trucks.

At the same time, as wealth inequality grows, so too is there increased pressure to cut grocery prices.  This is a challenging reality for the Co-op, which has a reputation for charging more than the competition.  To some extent, this is a natural outgrowth of the Co-op’s commitment to providing a decent living – and health coverage – to its dedicated workforce.

These realities pose and existential threat to the Hanover Consumer Cooperative Society.  Confronting those realities requires a Board with wisdom and courage.

Sometimes the imperative will be to act decisively – to grow, to change the way we do things, to take on new lines of business, to figure out new ways of persuading the public that they should do business with us and invest in membership.

At other times, the Board will need enough good judgment to do nothing – or, more precisely, to let our general manager and his team of excellent grocers do their work without interference.

This year there are eight people competing for the four available seats on the Board.  All are excellent people.  So, why pick me – especially because I’ve been on the Board so long?  (After my previous decade on the Board, I returned last year – so, I am in my eleventh year of Board service.)

I can think of three principal reasons.

First, any great board is a combination of new energy and institutional memory.  If reelected, I would be the most experienced member of the Board.

Second, if reelected, I would be the only lawyer on the Board.  I realize that people have different feelings about attorneys, but most folks agree that lawyers are good at thinking through problems, especially those with a legal dimension, which makes them good Board members.

Finally, and most importantly, helping to govern the Hanover Consumer Cooperative Society is not just a matter of generic public citizenship for me.  Co-ops – the cooperative movement, with its values and principles – are what inspire me and give me purpose.  I could not write at such length about my experience as a library trustee in Grantham, a justice of the peace in Norwich, or even my time on the board of Hudson River Sloop Clearwater, the environmental group founded by Pete Seeger.

Voting begins on April 1 and runs through April 30.  Co-op members can cast their ballots online at mycoopvote.com or in one of the stores.  All you need is your member number and your name as it appears in the Co-op’s records.  You can vote for up to four candidates; I would be grateful for your support and can promise faithful and principled service in return.

The $3.3 billion question: Why donate to the Cystic Fibrosis Foundation?

[Here's the link to my 2017 CFF Annual Fund campaign.]

An interesting factoid about the Cystic Fibrosis Foundation (CFF):  It has reserves of approximately 12 times its operating budget.  That makes the CFF among the wealthiest, if not the wealthiest, healthcare charities in the country.

Since I have smart friends, it’s hardly shocking that one of them would ask about this in response to my customary end-of-year pitch on behalf of the CFF annual fund.  Here’s my take on the full story, as I understand it.

The CFF is a dynamic and innovative organization.  It has to be.  The disease the Foundation is striving to conquer is a so-called orphan disease.  Even though one in 26 people in the U.S. carries a genetic mutation that causes CF, fewer than 40,000 of them actually have CF because that requires a CF mutation on both ‘sides’ of chromosome 7.

One innovation pioneered by the CFF is known as “venture philanthropy.”  Basically, the CFF partners with drug companies – co-investing, alongside big pharma, in the research needed to develop new drugs that will be effective against the disease.

Among the drug companies with which the CFF has partnered is Vertex Pharmaceuticals.  And, a few years ago, two Vertex drugs developed for CF patients hit paydirt.  The drugs – Kalydeco and Orkambi – are breakthroughs in the sense that they are the first FDA-approved therapies that actually treat the root cause of CF at the cellular level – the failure of a particular protein (called CFTR) to emerge from the mitochondria inside cells, migrate to the cell wall, embed itself in the cell membrane and thereby open the chloride channels that allow salt water to pass through the membrane.

This was such a big deal – such a huge breakthrough – that the financial implications alone were staggering.  In 2014 the CFF was able to cash out its share of the revenue stream associated with these drugs to the tune of $3.3 billion dollars.  That’s billion with a B.  Cashing that check is the reason the CFF has such a big reserve fund.

So why not just let that candle burn itself down a few years before people like me resume asking our friends to donate their hard-earned cash to the CFF?

Well, let’s start with the selfish reason.  It’s on my license plate: N1303K.  That’s the CF mutation I ‘contributed’ to my daughter – half the reason she has CF.  N1303K is a relatively uncommon CF mutation and it is, so far, not among the mutations for which Kalydeco and Orkambi have been proven effective.  I need the CFF to press onward until it has come up with therapies that work for people with all CF mutations.

According to the CFF, it’s taken expenditures of roughly $3 billion to get us from where we are today – the journey from an unknown reason for babies with salty skin to die, to a condition discovered in 1938 (by the chain-smoking lesbian pathologist Dorothy Hansine Andersen at Columbia Presbyterian, who noticed odd cysts on the pancreases of infants whose bodies she was conducting autopsies) to a disease whose median life expectancy is now in the early 40s.  I have a feeling it is going to take us more than $3.3 billion to get us the rest of the way.

That journey – and here we come to my less selfish reasons – will help more than just my daughter, more than just people with exotic CF mutations, and, indeed, more than just people with CF.  The CF Foundation has pioneered reforms that have changed healthcare.

My favorite example is the CF Patient Registry, started by one of my great heroes, the late Warren Warwick, a pulmonologist from the University of Minnesota.  The registry keeps data on every CF patient in the U.S. (at least those who don’t opt out) and we thereby have a deep mine of information about what works and what doesn’t work in treating the disease.  It seems like a no-brainer – but nobody was doing this as to any disease until Dr. Warwick started doing it for the CFF.

Another great CFF idea:  accrediting care centers.  Every hospital that treats cystic fibrosis must meet rigorous care standards set by the Foundation on behalf of the people who have the disease.  You don’t need a PhD in health care quality improvement to grasp the value of this.  When the bean-counters at the hospital that cares for my daughter start hassling the head of the CF care center, he can (and does) look them back in the eye and tell them that to stay accredited they can’t cut corners.

The CFF has been a pioneer in patient and family empowerment.  Right about when my daughter got her CF diagnosis in 2001, the Foundation acknowledged the reality that CF patients spend 98 percent of their time away from the care team at the hospital – ergo, it’s the patients and their families who are the real experts in treating the disease and maybe deserved a voice in how the standards for CF care are developed.

I could go on; the Foundation’s web site has many more examples – and an impressive pipeline of new therapies that are working their way through the FDA approval process.

Still, I must admit, donating to the CFF is a bit like donating to my alma mater (the very well-endowed Middlebury College).  Except it isn’t – not completely.  The CFF is not building edificies and adding institutes and satellite campuses so that it has an increasingly impressive and permanent presence.  The CFF is paying cool people – PhDs with bizarre specialities, doctors with deep insight, nurses who deliver the real healthcare – to do what their life’s passion is calling on them to do.

Oh, and did I mention that the CFF is also devoting resources to principled and aggressive advocacy?  The Foundation has been stalwart in its ongoing effort to thwart repeal of the Affordable Care Act, and it will be there to defend Social Security Disability because it knows these things are essential to the survival of people with chronic illnesses like CF.

Donating to the CFF is not going to be for everyone.  Even if you prepared for college at the prestigious St. Paul’s School – as did the friend whose inquiry prompted this essay – and even if you love the school (as even I do, living nearby and enjoying its campus), you might reasonably conclude that it doesn’t need any more money.  I guess you could draw the same conclusion about the CFF – but I do not.  I send the CFF enough money each year so that I notice the ‘hit’ not because the CFF needs my cash, but because I need to feel connected to its work.  I ask others to donate because I know that some of them will likewise take real joy in having that bit of palpable connection to my family and its challenges.  Some of them won’t – and for those folks, there are other worthy charities (some of which I donate to as well).  That’s okay too.

I’d be the last one to say it’s a blessing to have CF, or to be the parent of a person with CF.  But it’s a blessing to be connected to all of the insight, and passion, and plain-old human persistence and achievement that emanates from the community of people affected by this disease.  The big reserve fund notwithstanding, inviting others to share in that blessing is something I do without hesitation.

[If I've convinced you, here's that link again.]