The Death of Common Sense

Bureaucrats, like many of us, are enamored with their perceived intellect.  Intellectual pursuits morph into a dependence on procedures and self imposed protocol.  This dependence is comparable to our modern day dependence on navigation devices.

On Monday I was walking from a subway station to a conference center at a hotel.  I had looked for the place on a map many days before but on that day I chose to be dependent on the navigator app on my phone.  It served me well until just a few minutes before the estimated time of arrival.  I came to a complicated intersection where streets and a highway converged.  The navigation map directed me to make a left turn across the highway.  There were no crosswalks that would lead me there.  I was flummoxed for a good ten, sweaty, minutes.  Finally, I looked up the location of the event I was attending and read the conference center was at a Marriott Hotel.  I was looking for a Sheraton.  I looked up from my phone to read the large letters on the side of the building across from me to the right (not left) and rolled my eyes as I read “Marriott”.

My use of the navigation tool had overruled my use of common sense.

Little did I know that the death of common sense was going to be the theme for the day.  I spent the rest of the day at the Food and Drug Administration’s Advisory Committee Meeting for the proposed accelerated approval of a life changing drug.  And there I saw intellectual bureaucrats exhibit a tragic tenacity to hold protocol up on an altar while the blood of common sense was spilled from it.

Eteplirsen is a drug being considered for approval by the FDA.  This drug is a treatment for Duchenne muscular dystrophy, a fatal genetic mutation that damages muscles and confines boys to wheelchairs by the time they are in their teens and ultimately causes their heart or lungs to fail.  There is no cure or effective treatment for this horrendous condition and this is the first drug to slow the progression and contribute to a better quality of life without side effects.

This advisory committee concerned themselves with the methodology of the trial done by the drug’s company, Sarepta.  This advisory committee chose to vote on questions that addressed proper protocol versus the drugs effectiveness testified to by experts on Duchenne. Some on the committee realized they were being maneuvered by the FDA scientists.  Yet the negative vote was still the majority.

The flexibility necessary for a rare disease was disregarded as the FDA scientists worshipped procedure and dismissed the observations and experience of geneticists, doctors, scientists and many other experts on Duchenne!  And with egregious condescending attitudes they dismissed the real experts – the boys, young men and family members in the Duchenne community who know the disease and the startling effectiveness of eteplirsen.  The Duchenne community spoke with expected passion but not ignorance or desperation.  They spoke as experts.

If, when the FDA makes their final decision in May they choose to side with this advisory committee they too will be leaving common sense on death’s doorstep.  They will be showing a startling lack of ethics.  How can this government agency in a country that stands for freedom, withhold an effective treatment that has no side effects?  There are grave consequences to a decision to not approve: those with this particular strain of Duchenne being denied a drug that can improve their quality of life,  Sarepta likely losing the funds to continue their breakthrough research, and the entire Duchenne community losing the momentum of breakthrough research.

Breakthroughs that they don’t have the time to wait for.  The death of common sense means the death of boys and young men.  The FDA’s decision is one of life and death. No, eteplirsen is not a cure.  It is hope and relief for some.  And it is the beginning of a hope for a cure for all.  Common sense testifies to that fact.

NO. We do not understand.

No, we do not understand.  No, we don’t know what it feels like. Empathy is not the same as sympathy.  Therefore, it is hurtful and offensive to tell a family that has a son or brother with a degenerative, fatal disease that we understand.  How can we possibly know what it feels like to be told about your son’s painful and short future?  How can we possibly know the physical, emotional and financial price of caring for someone who is losing his ability to care for himself?  Someone we love.  Someone who is a child or a very young man.  Someone who is our son or brother or grandson.

No, we do not feel their pain.  We don’t live in a perpetual state of exhaustion; working full time and getting up multiple times a night to care for our child.  We don’t watch our child in daily pain and frustration and without hope.  We don’t watch other children play sports or jump or feed themselves and then weep in private because our child doesn’t have the same freedom.  We do not defend our brother from bullies or help him up from a pool of blood when he falls face down at school.  No. We do not feel their pain.  We are not that boy.

But some of us, myself included, do have the privilege of witnessing their resilience, optimism, defiance and joy.  And as I witness these lives that advocate rather than abdicate, I am humbled and I am inspired.

Yesterday, I sat at an FDA Advisory Committee meeting on whether to approve eteplirsen, a drug designed to treat a strain of Duchenne muscular dystrophy.  Over 1,000 people attended the meeting.  That number is impressive considering that many were boys with Duchenne and family members of boys with Duchenne.  They don’t just hop on a plane or drive to DC with the relative ease of the average healthy family.  Travel is complicated and even more sacrificial than their every day lives.

That number is even more impressive when you consider that this drug will only be effective for about 13% of the Duchenne population.  I sat between two mothers who have sons with a strain of Duchenne that will not benefit directly from this drug.  I sat next to my friend Beth and her daughter Katie, who had flown across the country to advocate for other families, and with the hope for further research on all strains of Duchenne.

No, we don’t know what it feels like to live their lives.  But if you know about this disease (and now you do) you still hurt for those who live with it.  I wept yesterday with those weeping in that room.  Heck, a reporter in the room was wiping away tears.

Because Duchenne’s Muscular Dystrophy is a rare disease of the worst disposition.

And those who live with it and fight against it are rare people of the best disposition.

I have a lot of observations and opinions on the process of approving or rejecting the release of eteplirsen.  But I choose to leave that for another essay.

Today I choose to laud people who have chosen the high road in the face of living a life they would not have chosen.

When asked, “Who is your hero?”, I don’t have to think twice.  My friend Beth, the mother of Andrew the brave and Katie the passionate, and the wife of Steve the steadfast, is my hero.  She is a woman who chooses Jesus over understanding; she chooses to trust Jesus.  And that choice enables her to choose life and choose joy.  That choice enables her to put others before herself.  That choice enables her to live heroically.

A choice that we should all seek to understand.

Coming to My Senses

Living in a different state my senses are heightened.  I’m observing all that is around me in a way that’s so much more intense than my daily living was in my native state of California.  The details of my environment there often blurred as I went about my daily routines.  As I settle in Virginia, the intensity of the newness has me bouncing between excited curiosity and internal overload.

My responsibilities are fewer.  We’re condominium renters now. Less upkeep, no yard.  We don’t have a community of friends and the activities or commitments that come with community.  We’re in an urban setting allowing for more walking and less driving which changes my list making and its priorities.  No longer do I set out to accomplish as much as possible each day.  My list now is measured by how many groceries I can carry home…after I’ve had time to pray, read, write, do household chores, and go on walks.  It is easier to take time to see, smell, hear, taste, touch.

Urban noises can contribute to overload.  Yet often, the noises add positively to my excitement over being in new surroundings.  My neighborhood fire station is kept busy in this dense population, attested to by the number of sirens I hear each day. Out our windows are buses, honking, music, the chatter of pedestrians, traffic roaring during work commute hours, a metro subway station a short walk from us, and on three nearby streets – carpool lanes switching into the District of Columbia in the morning and out of the DC in the afternoon. Planes take off over the Potomac a few short miles from us.  The nights are quite, save the occasional siren and insomniac bird.

In our California suburb coyotes ruled the night, trains could be heard in the distance as they ran through town, and sirens made you wonder if there had been another accident at that darn intersection, on the highway just outside of town, which leads to farmlands. During daylight, the shouts of children could be heard from neighborhood schools and parks; and the occasional screech of a teenager’s tires.

I believe my senses are particularly heightened because there are more changes in the weather and seasons here.  When it has snowed I’ve reacted with the same glee my children had when they were young and I’d take them for a day at the beach.  And now I’m experiencing the wonder of spring.  It’s becoming clearer to me why the Bible and so many works of literature used spring as an analogy for redemption, renewed hope and new life.

With the unfolding of spring, I’m passing glorious trees that weren’t in my old neck of the woods:  cherry trees, dogwoods, and redbuds.  I walk by robins at every turn, yet my old friend the black phoebe doesn’t fly in these parts. Ritually planted bulbs from last fall have appeared all through our town.  First there were the daffodils; now tulips and hyacinths.  The weatherman reminds his audience that it’s not safe to plant until Mother’s Day, but pansies and violets have started to surround the blooming bulbs.  Defiant homeowners and business owners are willing to replant after any unwanted spring freeze dares to try to discourage them.

And the azaleas.  Well the azaleas one expects in the humid south also remind me of the azaleas that thrive in dry southern California.  They take me to the azalea trees that bloom much earlier in the year on my parents’ patio.  Never failing to impress with their vivid display.

The architecture here enchants me.  Brick.  Brick townhouses, brick sidewalks, brick buildings red, brick buildings painted: yellow, white, grey, blue, even pink.  Historic, modern, old, new, worn, restored.  Beautiful, sturdy, classy, brick.  And charming narrow wood townhouses, all painted a different color than their neighbor. American flags displayed on many.  Plaque after plaque commemorating historic landmarks.  Lanterns with oil wicks, flower boxes, porches, stoops, iron hand rails and steps, stately doors, opaque foot level windows atop old basements, shutters of varied colors and metal stars marking timber beams on the sides of older buildings.  And old noble church buildings enhancing the landscape.

And of course, there are the people who live here. Native Virginians and transients and those who have made this home and the homeless.  Many with accents from other countries. Some with distinctively southern accents.  Wealthy and poor and in between. Old and young and in between. Friendly and kind. Distant and preoccupied. Responsive to a smile and the dignity of a hello. People worth knowing.

My senses warm to this place as the rivers, marshes, forests, bike paths, walking trails, sidewalks, city and its people, all join to surround me with beauty.  A beauty that nurses my homesick heart, and soothes me into believing that I can make this unfamiliar, lovely place my familiar home.

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