Addendum

It occurs to me drug companies have the same perceptual problem Trump struggles with, though I doubt he is self-aware enough to know it. Pharma gets it and spends big money on PR people to alter the narrative. Many of us are predisposed not to take claims at face value.   We judge both harshly because we have them firmly pegged. Fairly or not, we believe we are not playing for the dame team. I hang out on Manhattan’s Upper Westside. Not too many Trump voters there. Or any.

perception speaks louder than truth, though sometimes they coincide.

With great fanfare, Big Pharma announces a new MS drug. Sweeping claims infiltrate headlines. Automatically, I do not believe them.   P atient expectations skyrocket. Demand builds. Great for business. When Antigren (later Ty Sabr) iwas about to go to market, in the public mind, it was right up there with the Fountain of Youth.   Biogen has a well-oiled PR machine that spread around money to prominent patients to join the team. Somehow, I was not invited into the tent.

Trumpism was built on big talk and few details. And so far, no results. Now that healthcare has been blown, what goes down next?   The wall on the Mexican border was a big promise. Let’s wait and see.   I predict it will remind us of Jericho, except it will never will actually go up. I cannot imagine the tight-fisted Freedom Caucus wasting money on that.

Alas, I do not believe much of anything an I cannot imagine the tight-fisted Freedom Caucus wasting money on that.

Alas, I do not believe much of anything any more.

New MS Drug

Today’s New York Times story about a new MS drug is tantalizing. FDA Approves First Drug for Severe Multiple Sclerosis, the banner reads. What could that mean? I have been known to complain about medical hype, but this =is the Times.  I read on, curious to learn if my SPMS or the more virulent PPMS could be helped..

“Ocrevus by Genentech, showed the most notable results,” according to the Times, “in patients with relapsing multiple sclerosis, appearing to halt progression of the disease with few serious side effects. In patients with the more severe form, primary progressive multiple sclerosis, the drug only modestly slowed patients’ decline, but medical experts described it as an important first step.”

Wow. Another first step. Should we be excited? I guess every step forward matters. How much is open to question. Am I overly negative or just cynical? Big headlines sell products. Genentech said Tuesday that it would charge a list price of $65,000 a year. That is a hefty price tag for uncertain results.

News

Let’s keep this thread going for the moment and write about news. Walter Lippmann was a respected writer and journalist of the early 20th century. His book, Public Opinion, gave us a wonderful definition of news.   “News is a portrait of reality on which men ( citizens) can act.” Lippmann saw news as the fuel of democracy. News has utility, he argued. You cannot use your franchise well unless you understand your world.

Cronkite and many others understood and believed that. That value was built into broadcast news, codified by the FCC and taken seriously. When Reagan decontrolled broadcasting, the monkey was off broadcaster’s backs. They did not need to be told twice that they were free of public obligation.

The medium is largely an entertainment device now. And there is little sense of public responsibility today. Politicizing cable news and allowing networks to assume political identities is merely an extension of their efforts to manipulate the marketplace and search for revenue. Today, the purpose of news is to just make money.

Distressing? Yes. Structural? I am afraid so. I think the fake news label is largely a term used to muddy the waters and divide us. It should not be taken seriously.   The news media is not our enemy. But news is not our friend either. It only is big business.

Not Our Finest Hour

I worry that we are living in an era of a cultural change that does not reflect our best instincts as a nation.   We just, finally, ended an ugly political season.  We heard more about fear than about hope. So many of us seem to regard each other with suspicion. Immigrants are outsiders and are to be feared, not welcomed.   We are not one nation anymore but two. And we seem to have no interest in coming together. This is not a partisan critique, just a very sad fact.

Most of us grew up placing high value on citizen responsibility. Part of that was watching out for each other. Now it seems to be every man for himself. Nowhere is that more evident to me than in the draconian proposed cuts to Medicaid in the new healthcare plan. The proposed changes to Medicaid send a disturbing signal to the poor. The disabled, chronically ill and elderly better see the handwriting, too. . Some of us lose in all three categories. We are talking about hundreds of million of our fellow citizens and, yes, us.

I used to hear references to society’s most vulnerable and see others. Now I look in the mirror. This sick disabled old guy (getting old guy?) living in an era of social Darwinism regards the idea of survival of the fittest with some dread. Pres. George H.W. Bush’s notion of a kinder, gentler nation has been misplaced. I am sure there is much disagreement about various issues among us. I hope we can agree that this is not our finest hour.

 

 

Trumped

 

One event I missed when I was working on my book occurred when Donald Trump mocked Serge F. Kovaleski, who has a congenital joint condition called arthrogryposis, that limits flexibility in his arms, for his disability.   Kovaleski is a reporter for the New York Times and had criticized candidate Trump for fabricating the story that thousands of Arab Americans had stood outdoors in New Jersey, cheering as the World Trade towers fell to earth.

Any individual with a disabling disease, and we are many, should have seen the handwriting on the wall as we contemplated our futures. Able- bodied Americans should have joined our ranks but did not. The chronically healthy apparently had bigger fish to fry. That long moment of ridicule was revealing.

For those of us who wish to see the NIH budget, frozen since the Bush war in Iraq, dramatically increased to battle the terrorist assaults on our bodies by disease, we better face the fact that we have no friend in the White House.

In my hundreds of blog posts, I have stayed far from politics. All of us have other battles to fight. But for me, it is increasingly disappointing that our commander-in-chief would rather build a wall to keep out undocumented immigrants, who are dwindling in numbers, than help the hundreds of millions who live with chronic illnesses and disabilities.

I do not intend to write about politics again.   I will point out the sick exist in sufficient numbers to be heard. We will not agree on everything in this space, but I believe basic decency is imperiled. It is clear how little of us Trump believes. How we regard ourselves is being tested.

 

 

 

 

Hello Again

The Chasing Hope manuscript is in the hands of my publisher. (Blue Rider Press, Penguin Random House).   I await word from my editor, suggesting I descend into editing hell and brace myself. How deep and hot it will be down there is anyone’s guess. It certainly cannot be worse than the writing.

I take note every day of the effects of pressure and anxiety on my health. It is as if I could write the script. I do not need to enumerate the manifestations. I will say that weakness and fatigue have become constant companions. I could give up writing books, go to the beach and drink pino coladas, though I suspect a negative cash flow would follow.

I checked out the blog this morning. It seems more messed up than ever. I have a week of downtime. I am determined to get the blog up and running smoothly. If there are any readers left, perhaps resurrection is possible. I hope all of you are alive and well.

Trouble

Jan-

I am trying, but the blog will note even allow me to respond to anyone.  Working on it.  I say, Get a horse.

Richard

Drug Hype?

The Daily Mail called ocrelizumab, “A Huge Breakthrough Drug” for Progressive Multiple Sclerosis, adding the claim it was a “game changer.”   Where have I heard that before?   When Biogen was ready to turn Antigren loose on the market, their PR machine went to work and elevated patient expectations to dizzying heights. Antigren became Tysabri, knocked off a few MS patients and was yanked off the market. Tysabri was then allowed back with no fix, only a bolder warning.

I do not believe anything I read in the popular press about new wonder drugs. I asked a few MS docs about Ocrelizumab and was told it is basically Rituximab. I did a few rounds of that drug with no result. Why would I have high hopes for the new stuff, especially when I have SPMS, not the real target, PPMS? The press lumps all progressive M together.

The trial results did sound promising.   Patients with PPMS need hope and have been surviving in their no-therapy ghetto for too long. I wish them well. I just worry about news-hype. Too often newspapers are sold with stories that overstate.   If a drug sounds too good to be true, Maybe it is.

 

Holiday Spirit

George Bailey yells at Uncle Billy in It’s a wonderful Life, Hollywood’s classic story that defines the holiday spirit. “Where’s that money, you silly stupid old fool? George demands darkly. “Where’s that money? Do you realize what this means? It means bankruptcy and scandal. That’s what it means.”

hese are familiar terms. Missing in this holiday season and maybe lost for a long time is the sound of laughter and jingle bells in the distance. The uncomplicated joy of season, little kids on skates, bright eyes that light the sky seem to go unnoticed. Something is wrong, different since November.

Holidays are hard. That is not new. We tend to use these joyous days in a strange way, to measure our lives against expectations, where we are versus where we wish to be. Disappointment comes too easily. Whatever our faith, gratitude for what e have slips beneath fast moving fear. Our ability and willingness to put care away, if only briefly, and celebrate what truly is ours seems to be missing.

Uncertainty may hang over us for a long time to come. How sad that we might just sacrifice these joyous weeks because we no longer know how to let go and be happy. We only worry. Ask any merchant fighting for another year.

I see the world differently because my reference points are not the same. I routinely turn to those who sail directly into the wind, always at risk of going nowhere and even losing it all. They know what matters, what to care about or just move to the back of their minds.

The chronically ill have no illusions. Nearly half the population know the fragility of life and appreciate what we are up against. The physically threatened play for high stakes and are the calmest people I know. We do not sweat the small stuff.

If you believe health is life’s most precious gift, go to one who does not know if he or she will sit at the table with those they love next year. The sick may have learned to live in the moment, in ways few others understand. We have no choice. We have nowhere else to go, no matter who or where we are.

Life is precious. The sick understand as well as anyone. Nothing lasts forever. We have figured that out. What is gone in my life, even with all the uncertainty and hardship, helps me focus on what is still there. I do keep learning, as do others around me.

My grown children know life is unfair, and they cherish what they have. My kids see illness in the family. May these young people never lose what they have figured out around the kitchen table, that others in the world need help. These kids know they are not the center of the universe.

We, the sick, do not feel sorry for ourselves. Carrying around self-pity is a terrible way to live. The load is large, the road long.

Every day I can struggle down subway steps is another day I can live on my terms. I am grateful. Each week I can do for myself is a gift for which I will exchange any necktie.  In It’s a Wonderful Life, George Bailey doubts his life matters, and he disappears. His wife and children convinces George hew is wrong. George is not as powerless as he thought. Neither are we.   We have a lot to live for and much to do. We need to stand straight and kiss somebody. We should smile, wish someone well and get on with it.

 

Thanksgiving

I look forward to Thanksgiving. I like the holiday. I am a New Englander, so my positive attitude makes sense, for as long as it lasts. Family, friends and food. Who would have trouble with those? Two of our children are heading home. Seattle is a bit far for a turkey dinner. A wonderful energy will return to our usually empty house.

As always, ill health is the unseen guest at the table. Actually, my physical flaws are seen, even obvious. But nobody seems to notice anymore. The limp and slurring, clumsiness and fatigue are just part of the landscape. And then there is the matter of giving thanks.

To each his/her own, I say.   I am pleased I am still on my feet, that I have a life outside the house. I am in the homestretch on the book. The ax falls early next year. Most of all, I an grateful I can laugh and love and do not take myjourney too seriously. May you live in interesting times is either Chinese best wishes or a curse. I will leave that in the eye of the beholder.

Lastly, there is you. I am a lucky guy to have all of you, or whomever is left after I jumped off my moving train. I will be back by March. Until then, happy holidays.