Us vs. Them

I continue to believe Americans are caught in an us versus them sand trap.   Our country is split in half, culturally and politically. Why should this be any different?   We worry that we are losing out and do not trust each other. We need to be sure no group is getting a better shake than we are.

The new, whiter than white, brighter than bright health care bill is a prime example.   In this space, we have agreed that Trump is full of (choose your substance) when he asserts that individuals with preexisting conditions will be taken care of. That just is not true. And the numbers affected are staggering.

Reassuring rhetoric is good enough for many Republicans. Will that become most Republicans? The jury is out.   Here is the point they are missing. Us is them. We are fighting ourselves. When almost half of us have at least one chronic illness and almost twenty percent are disabled, who in the world do we think we are talking about? Us, joined by family and friends, neighbors and colleagues. I realize I am a broken record, but maybe it is time to protect ourselves.  Let’s stop only watching the world. Please turn around a see each other.

Dream On

Thanks to the Freedom Caucus, the sick and disabled are officially under the bus. Medical coverage for those with preexisting conditions is being jettisoned in the new GOP plan, a step backwards to mollify conservatives. High-risk pools would replace that provision in the ACA. Those would apply to a limited number of conditions with no price controls. We could be denied coverage or gauged. In short, we would be screwed. Trump, of course, will sign on to anything putting him close to the winner’s circle.

We are invisible and have no clout.

I was interviewed for a site called Big Think.   They are partners with a few universities sponsoring a conference about hope and optimism.   I talked about a theme we have discussed in this space. Most diseases known to humanity have an affinity group they call their own. These organizations provide support and a public profile for people living with the conditions.

According to Dr. Google, there are an estimated 30,000 human diseases known to medicine. The number is staggering. I had figured there were like, maybe one hundred. Way off. All of these single illness advocates are competing for the same dollars. The federal government does not want to finance research on specific illnesses. That would cause a riot. They just appropriate money and not too generously for NIH. And, of course, Trump is calling for cuts in the NIH budget.

So during the videotaped interview, I blathered on about building a movement around a coalition of these groups. A portion of the monies they raise could be pooled and used to lobby for increased research on chronic illnesses and disabilities. And we could become a political force with clout.

Dream on. Never going to happen. Affinity groups, including the NMSS, jealously guard their turf. They value their control over fundraising and how the monies are spent. I believe all are taken with their own perceived power. I know that sounds harsh, but I believe that is how the world works.

 

 

 

 

Backing Off

Charles M. Blow wrote the following in the New York Times after the 50-day mark of the Trump presidency: “There is no new Trump.

There is only the same old Trump: Dangerous and unpredictable, gauche and greedy, temperamentally unsuited and emotionally unsound.” Enough said. It is time to change the subject. I am making myself crazy, and that can be a contagious condition.

A funny thing happened last weekend. I had talked to Meredith and our kids (Kids? Ages 28 to 24) about putting together a family meeting to talk about my anger excesses during and after my two bouts of cancer. I had written about that in the Times in 2002.

“My head was down, and I was not seeing the people around me. I had assumed that the children would rejoice in my presence. They shrank in horror. My fangs were bared, and they were sharp.

Do your homework, turn off the music! I snarled. ‘Clean up that mess! Don’t leave it for your mother and me.

The kids had unloaded on me in that Cases column in the Science Times. On Sunday, Meredith and I sat with Ben and Lily, who were in town for a short visit. We got Gabe on a speakerphone, calling in from Seattle.   Our conversation was friendly, frank and forgiving. This was fifteen years later, and perspective took over. The conversation was for my new book. It brought back old memories, and our talk stayed with me.

Today, we are trapped in the moment in our national conversation about our lives. We are getting knocked around by high emotion. Those of us living with serious sickness must process our own frustrations. We operate on overload. That is not as healthy way to live. I am trying to disengage from politics. Trump is not going to change and I assume, neither are we. I cannot stop caring, but I do not have to bathe in my contempt. Now I am content with the newspaper in the morning. The television is off. Soon my sanity may return.

 

 

 

 

A Different Disease

This blog is intended to explore different dimensions of disease and our collective abilities to cope. That is a wide mandate. A disease is defined as a disorder of structure or function. We have a national disorder that is devastating. We are waving the white flag and giving in to sickness.

The White House is proposing a $1.2 billion cut this year to the National Institutes of Health’s budget, targeting research grants.   That is about a twenty percent cut. We seem to be laying down arms and assuming fetal position. Almost twenty percent of us live with a disability and nearly 50 percent have at least one chronic illness. Trump is turning his back on us, and there is silence.

One valid and vital coping mechanism is our resolve to fight back and protect our lives and those of our loved ones. That is instinctive and should be overpowering. Seems basic to me. Yet I hear little and sense no resistance.   Yet many are fighting for their lives.

My much-loved brother-in-law is fighting pancreatic cancer spread to his liver. It feels as if he has been abandoned. Rep. Tom Cole, a conservative Republican from Oklahoma, is one of the few on the Hill who gets it. “We have more to fear from a pandemic than from a terrorist attack,” Cole said on morning television.

There is so much at stake for us, and we have become the silent minority.

Editor

Clearly my editor is incompetent.  The writer is not too swift, either.  But you should get the gist of the argument.

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.