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.]







Outside/In gets upside down on energy efficiency

Has Outside/In been dragged into the Upside Down?

It is a question posed with the deepest respect for the New Hampshire Public Radio program hosted by Sam Evans-Brown.

Outside/In is about “the natural world and how we use it.” The stories are as vivid and compelling as the unnatural world – the Upside Down -- which the Duffer Brothers created for their Netflix series Stranger Things.

The nine episodes of Stranger Things 2 and the four episodes of Powerline, a series within the Outside/In oeuvre, have little in common beyond roughly contemporaneous release dates.  The Duffer Brothers are concerned with the fictional town of Hawkins, Indiana and its struggle against sinister forces from another dimension.  Outside/In is concerned with Hydro Quebec.

“Powerline” alludes to the fact that Hydro Quebec hopes to ship 1,090 megawatts of electricity from dams in northern Quebec to electricity users in Massachusetts via the proposed Northern Pass transmission line that Eversource proposes to slice through New Hampshire lengthwise.  While the discussion in New Hampshire has focused on how that would affect the Granite State, Outside/In has done listeners the service of tracing the power to its source.

The Outside/In production team did not just do that physically, by driving some 20 hours north of Montreal to check out some of Hydro Quebec’s biggest generation facilities.  They traced the political source of the hydropower as well, by telling the story of how the Quebecois quest for self-determinism clashed with the First Nations – i.e., the native people who were dispossessed as the provincially owned utility flooded thousands of acres of land to create the Hydro Quebec empire.

This is radio at its finest – an important story, previously untold, in mostly the real voices of the people who have lived the struggle. We’ve come a long way from Lake Wobegone.

What, then, gives rise to the concern that Sam and his co-host for the Powerline series, Hannah McCarthy, have let themselves be sucked into some alternative reality?  It’s the way they opened, and then closed, their final episode.

Episode 1 was about the history of Hydro Quebec. Episodes 2 and 3 were about the First Nations.  The final episode purported to tie the whole thing together, and the folks at Outside/In began that final installment with a startling promise.

“Were going to tell you what we feel like we’ve learned,” producer Hannah McCarthy advised her listeners.  “And once you know what we think, maybe you can come to your own conclusion about the electrons that are coming down the line.”

In an era when public radio is constantly defending itself against claims of liberal bias, it’s rare indeed for a public radio program to promise an actual conclusion – a confession of what the reporters and producers actually think of the subject they have been covering.  Here, verbatim, is how Evans-Brown and McCarthy made good on that promise at the end of Episode 4:

Evans-Brown: We’ve got to get our power from somewhere.  If we build the Northern Pass or any other power line to the north, that power is linked to flooded native land, the loss of habitats, the mercury in the fish.

McCarthy: But if we choose to get it from somewhere else, our power will be linked with other things – mountaintop removal mining and black lung, or fracking and methane emissions.

Evans-Brown: When you say no to one source of power you say yes to something else.  And no matter what source you name I can give you a dedicated constituency that has legitimate grievances with that source.

McCarthy: Think we should be building offshore wind farms? Talk to the fishermen and the marine biologists.

Evans-Brown: Think we should be building massive solar farms? Talk to the open space advocates or the grid’s electrical engineers.

McCarthy: Maybe that means that if anyone tries to tell you that there’s an easy answer when it comes to this power source, maybe tell them to think it over – to think it all over, one more time.

Such a conclusion is not just cosmically disappointing.  It’s wrong – just like the Upside Down, it flouts the realities that govern existence here on Planet Earth.

In reality, there is a power source that lacks a dedicated constituency with legitimate grievances.  That power source is known as energy efficiency.

Within seconds of hearing the end of Episode 4, I tweeted my contention about energy efficiency to Evans-Brown.  Negawatts instead of megawatts, I proclaimed  (well within my allotted character count).

The always affable Sam tweeted right back:  “Seems a little glib, don't you think? As long as there is an economy it will take watts. Efficiency alone can't get us to zero emissions.”

Yes it can!  Or, at least, efficiency can get us sufficiently close to zero emissions that the zero-sum game Outside/In posits, in which there will always be some constituency that is angry and exploited, will no longer be the dominant paradigm.

According to this chart from the Lawrence Livermore National Laboratory (LLNL), the U.S. used 97.3 “quads” of energy in 2016.  That’s 97.3 quadrillion BTUs, of which 66.4 was “rejected energy.”

Translation:  The U.S. wasted roughly two-thirds of the energy it used last year.   

The LLNL chart reveals that the record specific to the electric sector is the same: production of 37.5 quads; of which 24.9 quads were “rejected.”  In other words, there remains in our national economy a vast potential for squeezing more work per unit of electricity used – negawatts vs. megawatts.

One “dedicated constituency with legitimate grievances” not mentioned by Outside/In is ratepayers, especially the ones in New England where geography and history have conspired to make rates the highest in the continental U.S.  Thus it is useful to take note of this week’s reminder from the American Council for an Energy Efficient Economy (ACEEE).

Recently the investment banking firm Lazard issued its annual estimate of the levelized cost of available sources of electricity – but, unlike in previous years, energy efficiency disappeared from the report.  So, the ACEEE compared the Lazard numbers with established estimates of how much it costs electric utilities to invest in energy efficiency (via subsidies to customers)  and, yet again, those negawatts are the cheapest thing out there.

Here in New Hampshire, our electric utilities recently estimated that ratepayer-funded energy efficiency programs, paid for via the system benefits charge on customer bills, cost about 4 cents per kilowatt-hour.  Again, according to the utilities, that’s the cheapest source of power we have, if by “power” you mean “source of the next unit of work we will pay our utilities to wring out of the electricity grid for us.”

 This is a big deal, so one can only hope the affable Outside/In crew will forgive glib comparisons to TV series about idealistic, scrappy youth who outperform their elders when it comes to beating back evil.  It’s even more glib to conclude that no plausible energy option exists that is superior to others.  Energy efficiency is that superior option.

New Hampshire lags behind the other New England states when it comes to energy efficiency.  We are the last New England state to adopt an energy efficiency resource standard (EERS) -- and when it kicks in on January 1, our EERS will involve energy savings goals roughly half of those that apply in Massachusetts.  The Bay State happens to be the best state in the nation when it comes to energy efficiency, according to the latest ACEEE annual scorecard.  New Hampshire is 21st.

Meanwhile, our state House of Representatives will vote next month on House Bill 317 which, if it becomes law, will hamstring ratepayer-funded energy efficiency in the Granite State by requiring the any changes to the system benefits charge to be enacted by legislation as opposed to administrative approval by the Public Utilities Commission.  The proponents of the bill could not truthfully attack energy efficiency on its merits, so they based their argument on the dubious theory that the system benefits charge is a tax.

The system benefits charge is not a tax -- the government doesn't collect, hold or spend the money -- it's a tariffed rate, charged by utilities with PUC approval.  The House Science, Technology and Energy Committee nevertheless approved the bill last month on a 11-10 vote after one member proclaimed that if the system benefits charge isn't a tax then it's "a robbery."

That's the kind of thinking one would expect to see in the Upside Down.



Thoughts on the November 4, 2017 Co-op Cafe in Greenfield

[I attended the Co-op Cafe event sponsored by the CDS Consulting Co-op and the Neighboring Food Co-ops Association -- and was moved to share the following thoughts with some of my fellow attendees.  On reflection, it seemed like it might be useful to post my thoughts publicly -- if only, perhaps, to attract the attention of others who attended similar Co-op Cafe events this year in other locations around the U.S.]

Fellow Cooperators:

This is an experiment, so please bear with me.  I am writing to a somewhat random list of folks who attended Saturday’s Cooperative Café in Greenfield, sponsored by the CDS Consulting Co-op and the Neighboring Food Co-ops Association.  My purpose is to generate some dialogue and, perhaps, to make a bit of a course correction in the regional and national conversation among food co-op board members both regionally and nationally.

As the organizers made clear in the presentations they used to frame the discussion, we serve our cooperatives, and represent their members, in challenging times.

When I first joined the board of the Hanover Consumer Cooperative Society in 2003, our co-op had a more or less uncontested 25 percent share of the local grocery market.  The talk was of how to grow.  We consistently paid out a substantial patronage refund each year.

No more!  Our co-op is on track to finish the year in the red.  Sales are drifting downward.  Workplace issues are on the increase, as economic pressures on individuals mount and co-ops find it more and more challenging to be generous with employees.

Given all of that, it was refreshing to participate in such a positive and lively event as the one we were treated to in Greenfield.  How useful to take a step back and consider the positive impacts our co-ops have on people and communities.  How helpful to think about how all of us – elected trustees and trusted employees – contribute to the successes we achieve.  How vital it is for each of us to take stock of what we can do, as individuals and as members of our co-ops’ teams.

I nevertheless find myself wondering whether others share my interest in taking the conversation to a higher and more intense level.  Why?  Well, a couple of things really struck me about Saturday’s proceedings.

The first was that the only thing we heard from our national organization – the National Cooperative Grocers Association (NCGA, currently doing business as National Co-op Grocers, or NCG) was a pre-recorded talk from Shiela Ongie, NCG’s sustainability manager.  She talked about “the new normal” and described NCGA/NCG as “a business services cooperative.”

The second thing that struck me was how often the informal chatter at the tables turned to various crises that boards of individual co-ops have confronted recently.  At once co-op, the board has had to hire six general managers in seven years.  At another, board meetings became so contentious that it was impossible to conduct meetings without an outside facilitator to maintain order.

My sense is that we are too disconnected from each other and from our national organization.  We should be sharing our stories – our troubles and our triumphs – with each other.  And we should be engaged in active dialogue with NCGA about this “new normal” and what we, together, are doing about it.

As it happens, we have an excellent model in the Neighboring Food Co-ops Association.  It has been around in one form or another for more than a decade and, unlike what we have at the national level, the NFCA has always been a forum at which board members and GMs (plus other key co-op employees) have held freewheeling and frank dialogue about what’s really going on.

Our business ties, however, are at the national level – largely through the national buying program of the NCGA through which co-ops combine their wholesale purchasing power to acquire goods from UNFI, the nation’s biggest distributor of organic and natural foods.  Are you aware of how interdependent this makes your co-op with the other co-ops of NCG/s eastern “corridor”?  Did you know that one NCG co-op (PCC in Seattle) is so big that it’s exempt from these interdependencies – in essence, this co-op is its own NCG corridor?

I have a vivid memory of attending CCMA in 2005 – yup, that long ago – in Albuquerque and hearing the first president of NCGA explain what this new organization (born as a merger of several regional food co-op organizations) was all about.  I raised my hand and politely asked when the boards of member co-ops would have a chance to participate in the work of this new association.  The NCGA president told me to be patient; that it would take a while to get the national buying program off the ground.  She promised that once NCGA had fully launched those important efforts, it would turn to the kind of work one would expect from a national association.

Regrettably, NCG never did that.  Instead, it dropped the “A” from its trade name (but not its legal name) and now describes itself as simply a “business services cooperative,” as we heard from Shiela Ongie.  Understanding the need for connection among boards, NCG pays the CDS Consulting Co-op (e.g., the folks who led us on Saturday – Michael Healy, Marilyn Scholl and Mark Goehring) to superintend our gatherings, but it avoids engaging with us directly, much less being accountable to us.

Saturday’s Co-op Café was my idea of a good time.  I enjoyed making new friends, connecting with old ones, and having animated conversations about why and how our co-ops make a difference in our communities.  But I yearn to join with directors from food co-ops everywhere in taking the conversation to a higher level – so that we understand what we are accomplishing as a player in the national economy.

In my judgment, the most important and inspiring thing ever written about co-ops remains the widely circulated essay by Brett Fairbairn, “Three Strategic Concepts for the Guidance of Cooperatives.” The most important of those three concepts is cognition – “the glue that keeps the co-op and its members together when both are changing,” according to Fairbairn.

He concludes: “Each co-operative will have to find its own approach and its own mix of communication practices, educational activities, research functions, units, and policies that support the cognitive processes of the organization.” That’s true of us as individual co-ops and as a network of cooperative grocers.  As the elected representatives of the owners of that network, we need to take our cognition to a higher level – to get past bland generalities and cheerleading based on the mistaken assumption that everything else, from what happens in our stores to the details of our national buying program, is off-limits as “operations” or taboo as potentially too contentious.

What do you think?



My annual invitation for your help in the struggle against Cystic Fibrosis

This is one year in which the raw data really does tell the story.  So, as they say on public radio, let’s do the numbers:

71: Rose’s FEV1 as measured on Labor Day.  Rose is my daughter, a high school sophomore. She has cystic fibrosis. FEV1 is “forced expiratory volume over one second” – a measurement of how much air you can blow out of your lungs. A ‘normal’ person, who doesn’t have cystic fibrosis, should have an FEV1 of 100.  Go below 40 on a permanent basis and you need a lung transplant.

25: The number of days Rose spent in the hospital after that dismal FEV1 result.

$136,000: The bill for those four weeks, paid for by the kind of health insurance everyone deserves.

$0: The amount of money I had left after Rose beat me at Monopoly one night at the hospital. What can I say? The kid managed to get her hands on Boardwalk and Park Place – and then build houses on them.

0: Number of times the U.S. Senate voted to repeal the Affordable Care Act while Rose was in the hospital, despite repeated threats to do so.  The Cystic Fibrosis Foundation was one of many mainstream healthcare organizations that pulled out all stops in an effort to preserve this critical protection for people with chronic illnesses.

8: Number of Tampa Bay Rays struck out by Chris Sale of the Boston Red Sox on September 9, when we strolled over to Fenway from the hospital to watch a game. Alas, Rose had to stay behind because being in the hospital as a CF patient is just like being an inmate in a supermax prison. The Sox beat the Rays 9-0.

1,656: Number of Morning Edition sports commentaries by Gold Star CF dad, former Cystic Fibrosis Foundation board chairman, and National Humanities Medal winner Frank Deford including his last on May 3, just a few weeks before his death.

2: Number of times U.S. Rep. Tom Marino (of Pennsylvania's 10th district) withdrew his name from consideration as the nation’s drug czar this year in disgrace. Marino, the only CF parent in Congress, was nevertheless a consistent and outspoken vote in favor of repealing the Affordable Care Act.

2: Number of U.S. Senators who heard Rose’s dad testify in Concord in June that repeal of the Affordable Care Act would be a cruel blow to CF families. At least two other folks from the CF community also testified. Thank you senators Shaheen and Hassan for listening!

… and finally:

103: Rose’s FEV1 as measured on October 11 – a few days after Rose left the hospital and returned to school.  What an astonishing improvement – lung function literally better than perfect!

As such a remarkable year winds down, my heart is again filled with gratitude – to all of our friends and loved ones whose help and good wishes were so welcome while Rose was in the hospital, and to the Cystic Fibrosis Foundation (CFF).  So, once again, I am offering up this annual opportunity to connect you.

I don’t know how it works with other diseases, but in the CF world the CFF is the mother ship. 

They sponsor the research that has unlocked the secrets of the disease at the cellular and genetic levels.  They partner with drug companies to develop the breakthrough therapies.  They accredit the CF care centers to make sure high standards prevail.  They keep the patient registry – a vast storehouse of data that makes it possible to understand how the disease really affects people.  And they stand tall with CF families when Congress and the man in the White House need to be introduced to their consciences.

So, with each paycheck, I have my employer deduct some money and send it to the CFF.  And, at the end of the year, I make a donation to the CFF’s annual fund.  I invite you to do the same.

Consider doing it, this year, in memory of Frank Deford.  I am sorry I never met the man.  He was a real hero and you should read the book he wrote about his daughter, who died of CF at just eight years of age back in 1980.  Thanks to families like the Defords, we have come so far since then.

Resources are scarce and this is a difficult time for our nation.  We are all bombarded with requests for money from all kinds of worthy charities.  But if it would give you pleasure to connect with Rose and her quest to live and thrive with CF, then please consider a gift to the CFF Annual Fund.

I’d be honored if you made your donation through my CFF Annual Fund page, which you can find here.

Thank you heartily!

My June 23, 2017 testimony at the emergency hearing convened by Senators Shaheen and Hassan on the GOP healthcare bill

Senators Shaheen and Hassan:

Thank you for the opportunity to testify today in my capacity as the proud father of my smart, accomplished, ambitious and healthy 15-year-old daughter Rose, a kid who also deals every day with a life-shortening chronic illness: cystic fibrosis.

Rose is an equestrienne, a math whiz, a big sister, a social activist and also someone who has to spend two hours a day on various therapies designed to fend off the effects of her CF. Then, all night long, Rose is wired up to a pump that gives her supplemental nutrition through a PEG tube – basically, a surgically created orifice in her belly.

Still, we are blessed. In 1980, the late sportswriter Frank Deford lost his eight-year-old daughter to CF, because back then we didn’t know how to treat the disease. Deford went on to help lead the Cystic Fibrosis Foundation and today the Foundation is the most successful healthcare charity in the universe. Thanks to the therapies and treatment protocols the Foundation has developed, I have every reason to believe I will never experience what Frank Deford experienced – a dad burying his daughter.

Cystic Fibrosis is the quintessential preexisting condition – in a good year, with no hospitalizations, it costs upwards of $100,000 to treat CF. Rose just found out this week that this isn’t a good year – she’s likely to have to spend some time in the hospital this summer to chase out the opportunistic bacteria that like to ruin the lungs of CF patients.

So, without the Affordable Care Act or something a lot like it, my daughter is uninsurable. Maybe she can get as job with health insurance, but then there’s the problem of lifetime benefit caps.

The CF Foundation has unlocked the genetic and microbiological secrets of this disease, and now it is asking CF parents like me to urge senators like you to save the Affordable Care Act. For a mainstream charity like that, without a partisan bone in its body, to take a stand like that is, to paraphrase Joe Biden, a big deal.

Indeed, it’s a big deal for me to speak at a forum like this. I’m an appointed state official who would like to be re-appointed, and the way to do that is to stay out of politics. But I am first and foremost a loving father, and I have a conscience that does not allow me to remain silent. The healthcare bill pending before you is cruel and unconscionable, and in the name of every dad who has ever lost a child to a chronic illness I urge you to consign this bill to oblivion.