The Democrats’ Debates Were Disappointing, and Yet…

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Candidates in Second Democratic Presidential Debates 2020

My Oh My! So much drama—even attacks on No Drama Obama!

Let me state at the outset that I had never intended to become so overtly partisan in this blog. I even wrote a post a while back explaining why I wouldn’t discuss the elephant in the room (President Trump) because so much stuff was appearing elsewhere, and I wanted to focus on finding our common ground.

My overarching goal remains, and in my own way, I’m still trying to do that.

When the President is an incumbent, it’s assumed the election is a referendum on him. But now that this President has made blatantly racist attacks on people of color a feature of his daily rants, I believe the 2020 election is a referendum on us.

Who are we as Americans? What kind of country do we look forward to, and how devoted are we to working toward a more perfect union?

Will we give our seal of approval to this man for another four years? I know some of you reading this post are Republicans with varying degrees of support for Trump. I’m not attacking you personally or trying to change your minds. 

Rather, I’m assuming that most American voters—Democrats, Independents, and growing numbers of “Never Trump” Republicans—are seeking a reasonable alternative to Trump and want to see Washington functioning again to pass common-sense legislation in their behalf.

I believe/hope that people are eager to denounce him at the ballot box, proving that he doesn’t represent the vast majority, and that we are seeking leadership that unites us in hope and common purpose, rather than divides us in hatred and fear.

In that spirit, I offer you my thoughts after viewing the second round of debates—and I’ll explain why I found them sorely lacking.

It’s still early, but I saw little inspiration among the 20 candidates on the stage in Detroit. Part of the problem, I believe, was CNN’s approach.

It was clear that CNN wanted a food fight: the questions were designed to encourage candidates to attack one another. I didn’t think that was good TV. I also thought it was poor broadcast journalism and unhelpful for educating the public.

Admittedly, it’s tough to stage interesting debates among 10 candidates, and I felt bad about how little time each person had to make her/his points. 

But the questions were also unrevealing in eliciting what kind of Presidents they would be. 

Healthcare is a critical issue; it was largely responsible for the Democrats’ winning the House in 2018. Americans want to know they will have decent health care that covers preexisting conditions, is within their means, and is dependable, regardless of their circumstances. 

The discussions were sometimes too wonky and confusing for viewers and at the same time often inadequate, leaving out important issues, such as cost to taxpayers.

I wish each candidate had given this answer: “We’ll bring the best minds together to come up with the most realistic affordable plan that covers the most people possible.” 

In other words, we’ll progress beyond Obamacare without gutting it, adding the public option that was originally intended, and regulating both the insurance companies and Big Pharma.

Many other countries have private insurance companies as part of their healthcare mix; they simply regulate them more aggressively than we do.

Medicare for all vs “Anything less lets insurance companies ruin America” is to me an unnecessarily divisive issue.

I think improving Obamacare would satisfy most Americans—without frightening them.

And how quickly people have forgotten how hard that battle was—that passing the legislation was a “big f—–g deal,” in former VP Joe Biden’s memorable words. More about all-important processes appears below. 

If the public option works as intended, we’ll get to Medicare for all but won’t immediately send our economy into a tailspin.

Healthcare is now about 18% of our GDP. We need a smooth transition to the next stage. I haven’t heard any Medicare for all candidate discuss this point.

But most importantly, the emphasis should be on the fact that every Democratic candidate believes that healthcare is a right and supports expanded coverage, while Trump and the Republicans have been decimating Obamacare and, in all the years they claimed to find an alternative, have not done so.

It is simply not an article of faith in the Republican Party as it is among Democrats. Quite the contrary. 

As the terrible mass shootings mount up, I can’t write this post today without including sensible gun legislation. This is another issue where the majority of the public agrees, and so do all the Democratic candidates.

Not so the Republicans in Congress and the President. And despite his palliative words after the most recent shootings, since Trump took office, we’ve had a substantial uptick in domestic terrorism. We know white nationalists claim him as one of their own. If he cared to change that image (and possibly reduce the carnage), he would change his rhetoric.

With gun safety legislation, again, process is critical, as we’ll discuss below.

Foreign policy, which is probably the most important aspect of a President’s efforts, and is currently fraught with dangers that Trump both inherited and has created, took up a mere five minutes of the 2-1/2 hour debate.

I am puzzled why, just shortly after the Mueller testimony, CNN felt that discussing the role of Russia was barely worth mentioning. And there were no discussions of Iran, North Korea, Syria, and other potential hot spots.

Since a number of the candidates have had little or no direct involvement in this essential component of being President, it behooves the next debate organizers to build in adequate time and questions that reveal the candidates’ world views and thought processes. 

I was impressed, for example, with Washington Governor Jay Inslee’s stating that he voted against entering the war in Iraq when he was a member of Congress. (He took Vice President Biden to task for voting for it.) 

Inslee said the arguments for war were unconvincing. In an interview after the debate, when he was asked why so many Democrats voted to go to war, he explained that in the post-9/11 environment, the drumbeats for war were very difficult to withstand. But he did withstand them—a fact that to me says a lot about the man.

Speaking of Inslee brings us to climate change, which he has made the focus of his campaign —though not as a single issue: he has tied it to economics, undue burdens on poor and minority communities, and other important topics.

He has thought and studied the issue extensively and is clearly the candidate most deeply committed to quick concrete actions to confront climate change.

And while it’s good that every Democratic candidate accepts the scientists’ warnings and promises to act, I find his commitment especially comforting. 

One extremely critical issue hasn’t come up in either debate: the judiciary. 

I am quoting extensively here from two articles. One, by Dahlia Lithwick, is titled “Democrats Still Haven’t Learned Their Lesson About the Courts.”

The other, which she cites, written by Ezra Klein, is “Pete Buttigieg had the most important answer at the Democratic debate.”

I find them both important in terms of those critical process matters I referred to earlier, and I hope you’ll read them in their entirety.

Let’s start with Klein’s article in Vox. Here’s where reality lies—beyond fine policy ideas and whether they’re progressive enough.

“South Bend, Indiana, Mayor Pete Buttigieg gave the single most important answer at Tuesday’s Democratic debate.

“It came after a lengthy section in which the assembled candidates debated different health care plans that have no chance of passing given the composition of the US Senate and then debated decriminalizing unauthorized border crossings, which they also don’t have the votes to do, and then debated a series of gun control ideas that would swiftly fall to a filibuster and, even if they didn’t, would plausibly be overturned by the Supreme Court’s conservative majority.

“That’s when Buttigieg spoke up:

‘[This is] the conversation that we have been having for the last 20 years. Of course, we need to get money out of politics, but when I propose the actual structural democratic reforms that might make a difference — end the Electoral College, amend the Constitution if necessary to clear up Citizens United, have DC actually be a state, and depoliticize the Supreme Court with structural reform — people look at me funny, as if this country was incapable of structural reform.

‘This is a country that once changed its Constitution so you couldn’t drink and changed it back because we changed our minds, and you’re telling me we can’t reform our democracy in our time. We have to or we will be having the same argument 20 years from now.’”

Klein continued:

“So far, I’ve found Buttigieg’s campaign underwhelming on policy. But where he’s clearly leading the field is his emphasis on structural reform. Buttigieg isn’t the only candidate with good ideas on this score — Elizabeth Warren and Jay Inslee have been strong on this too — but he’s the only candidate who consistently prioritizes the issue.

“The reality is Democrats are debating ever more ambitious policy in a political system ever less capable of passing ambitious policy — and ever more stacked against their policies, in particular.

Their geographic disadvantage in Congress is only getting worse, Republicans control the White House and the Senate despite receiving fewer votes for either, and an activist conservative Supreme Court just gutted public sector unions and green-lit partisan gerrymandering.

“Policy isn’t Democrats’ problem. They’ve got plenty of plans. Some of them are even popular. What they don’t have is a political system in which they can pass and implement those plans.

“Buttigieg, to his credit, has a clear theory on this. When I interviewed him in April, he argued that ‘any decisions that are based on an assumption of good faith by Republicans in the Senate will be defeated.’

“The hope that you can pass laws through bipartisan compromise is dead. And that means governance is consistently, reliably failing to solve people’s problems, which is in turn radicalizing them against government itself.”

Now let’s briefly look at Lithwick’s article in Slate:

“We now know that a single Trump judge can gut the Affordable Care Act, or permit a wall to be built on the Southern border, or try to end Roe v. Wade.

This isn’t a thing to contemplate after a Democrat wins the presidential election. It is, with every passing day, the reason to doubt whether any Democrat can win the presidential election ever again. And the same is true for the Senate, and for the House. Which is why it has to be a first-order discussion, not last. 

“As Klein wrote: ‘This is what Buttigieg gets: To make policy, you have to fix the policymaking process. Some of the other candidates pay that idea lip service, when they get pushed on it. But he’s the one who places that project at the center of his candidacy.’

Lithwick concluded:

“The Democrats on the debate stage are embarrassed to be caught out without answers to questions about battles that their constituents cannot afford for them to continue to lose. Democratic voters showed up in 2018 in part because of their horror at losing the Supreme Court.

Sure, it’s embarrassing that Democrats have been badly outplayed by Mitch McConnell, who follows no norm or judicial ideal beyond ruthless pursuit of power.

“But it should be more embarrassing that reforming the courts has been deemed too hard to warrant a single debate question. By all means let’s talk about Trump and impeachment and ‘kitchen table issues’ and the environment; they all matter.

But the fact that the machinery of justice has been captured by a monied minority means that democracy itself is on the ballot. That should matter enough to warrant a question.”

All this is why I found the debates so disappointing. While the candidates were attacking each other—and President Obama, through Joe Biden—and discussing their plans for what they’ll accomplish once they become the President, for the most part they didn’t talk about these huge, powerful forces at all. 

And this is where their energy—and ours—is essential.

I intend to vote for whoever wins the Democratic nomination, hoping that person is sufficiently inspiring to energize a broad swath of diverse constituents.

I think the divisions between moderates and progressives figure less in most voters’ minds than does their sense of the decency, competence, integrity, and leadership skills of the individual they’d like to see in the White House—especially now. 

Thus, I believe it is essential that we try to defeat Trump with the largest possible mandate, demonstrating total rejection of his racism—as well as his corruption, incompetence, divisiveness, and unwillingness to protect the US from those who have directly threatened our elections and are continuing to do so. 

But clearly that’s not enough. It is so important that we educate ourselves and make our voices heard about these structural issues that are making it difficult, if not impossible, to get anything substantive done in Washington.

Democrats need to take the Presidency, House, and Senate, and then focus on the critical changes needed—before a minority party eliminates any chance of the majority’s will being enacted. 

These are large challenges,  but while some of the candidates talk about the need for “Big Ideas,” we need to let them all know what those big ideas must include. We made it to the moon 50 years ago, you’ll recall. We can do this.

And we must.

Annie

A Cautionary Summer Tale

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I have a few friends who are medical nihilists (several of them are married to physicians). They avoid medical care whenever possible, rarely see a physician, and when they go, generally ignore the physician’s instructions.

I am cut from a different cloth. I go to the doctor for preventive care, get my flu shot every year, and seek medical guidance if I’ve had a problem for more than a few weeks.

I do have several chronic conditions and a bionic knee and wrist. However, I am fortunately, at this point, in good health. (Cue my late mother’s voice here, making clucking sounds to ward off the evil spirits.)

I tend to be super vigilant about medical matters. In fact, as I’ve written previously, I tend to catastrophize. That sudden pain in my leg? The one that’s probably a pulled muscle? Well, it feels hot, so it could be a blood clot, couldn’t it? (I also meditate, but sometimes the worry forces overwhelm the calmness regimen.)

And, having worked as a medical writer/editor in the past, I realize that I possess just enough medical knowledge to be a danger to myself and others. (I do, however, refrain from prescribing–and for the most part avoid misdiagnosing my friends and family.)

Although it’s gotten worse in recent years, as those around me have died—or narrowly escaped death—this tendency on my part to focus on all things medical has been ever so.

I think I’ve known the seven warning signs for cancer since I learned to read. For those who don’t share my fixation, the first sign is “Any sore that does not heal.”

But the tiny mark on my nose seemed insignificant—certainly not a sore as I understood the term. Occasionally, a little dry skin flaked off and the skin beneath looked slightly pink; then it quickly returned to its previous state. I found it curious, but not at all alarming. This went on for months.

One night, when the spot looked pinkish, I dabbed it with a little cortisone cream that my dermatologist had given me for a previous condition.

Shortly thereafter, I stepped into the shower. When I stepped out, I caught a glimpse of my face in the mirror, and blood was gushing from that tiny spot on my nose—it seemed like several tablespoonfuls.

My dermatologist saw me the next day. “It doesn’t look like anything,” she said, poring over it with her magnifying glass. “But whenever there’s bleeding, we do a biopsy.”

The biopsy was definitive for carcinoma, but wishy-washy as to type. At varying times I was told it was a basal lesion with some squamatization, a squamous lesion, or a “collision lesion” of both cell types. The latter made me envision two small bumper cars packed with differing cells, going at each other at high speed.

One point was certain: the innocuous looking thing had to go. I was referred to a Mohs surgeon for a procedure in which the lesion is removed layer by layer while the patient waits for the biopsy report stating that the margins are clear: the cancer is gone.

At the pre-op visit, the surgeon’s nurse drew a fairly large circle around the lesion with a green marker pen. That should have alerted me to what was ahead; it did not.

The surgeon explained her procedure and then said, “I think we should have a plastic surgeon on standby to close the wound.”

I was puzzled. It was so small—surely a few stitches would do. Then she said, “You have a fine aquiline nose; I think it’s wiser to have a plastic surgeon do the closure.” OK. The plan was that I would see a surgeon she works with on such cases; she’d complete her work, bandage me up, and he’d close the wound later that day. Seemed reasonable.

But when I met the plastic surgeon pre-op, he began describing what sounded like pretty dire procedures. “We can take a skin graft from another part of your body that’s close to the color of your nose,” he said. “Or we can do a flap from your forehead.” All of a sudden, this tiny lesion was wreaking outsized havoc on my face.

I spoke with the Mohs surgeon’s nurse, who assured me that the plastic surgeon gave “worst possible scenarios.” I felt better—for a time. I had agreed to the graft, if needed, because the plastic surgeon said if I didn’t like the results, he could always do the flap. But once the flap was done, no revision would be possible.

Fast forward: the cancer was gone after a single layer’s removal: very good news. The plastic surgeon told me to come right over. He looked at the wound and said, “We’ll take a graft from your clavicle; do you mind a scar?”

I was willing to forgo a pristine clavicle for a chance that my “fine aquiline nose” wouldn’t be seriously disfigured. I will acknowledge that my attachment to it has been more than physical and utilitarian.

I was awake through the surgery, and we all laughed at the surgeon’s stories of his parents’ youthful indiscretions. Not sure why he raised that issue, but it did pass the time and take my mind off the snipping and sewing.

He had warned me the healing would take about a year, so I’m more than three-quarters of the way there. There have been bumps along the way—just recently, one quite literally.

I was walking through a revolving door and, certainly not practicing my mindfulness, stepped ahead before the opening had reached me—like a tiny bird ramming into a window. The only part of me that hit the glass was my nose—straight on.

I began icing it as soon as I could and called the plastic surgeon’s office to see if I should do anything else. He returned my call in minutes—an unusual attentiveness that suggested concern.

“In a battle between a door and a nose, the door always wins,” he said brightly. (He’s a good surgeon, but I didn’t need the wisecrack.) “Do you think it’s broken?” he asked. I said I really didn’t think so; it didn’t hurt that much and was simply quite red. “Keep icing it on and off all day,” he responded. “It should be OK.”

The next day, when I awakened to find the skin graft in place and not beside me on my pillow, I appreciated how fortunate I was not to have damaged myself seriously.

Now that I have a portion of my clavicle attached to my nose, I’ve thought about whether it’s still appropriate to call it a nose. It seems more like a hybrid of two heretofore autonomous body surfaces, finding their way to peaceful coexistence.

It’s a strange phenomenon, but I profoundly recognize that in the scheme of things, so many people struggle with far worse medical conditions for many years. I’m very grateful for my situation and do, mindfully, appreciate every day.

Some mildly annoying lifestyle changes go with this new territory. I’ve had three squamous lesions in less than two years (two were in situ—precancerous), of which two were on my face. Thus, I’ve been warned by both the Mohs surgeon and my dermatologist that although the skin damage happened years ago, I must now take extra precautions: sunscreen (more than 30 SPF) all year round, rain or shine; hats with brims; sunglasses; and long sleeves.

In this 90 degree heat, I get some strange looks, but so be it. A woman of mystery–perhaps a secret agent, who has traded her traditional trench coat for UPF (ultraviolet protection factor) garments.

So ends my cautionary summer tale for you—especially those who are young and carefree. Just one or two bad sunburns can do a lot of damage, and mine occurred before we were worried about losing the protection of the ozone layer.

Don’t be cavalier about your exposure to the sun. And please: don’t ignore any small lesions, no matter how innocuous they may appear, if they hang around for a while.

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One more thing: if you’re even thinking about going to a tanning parlor, fuggedaboudit!

Your thoughts, experiences…?

Annie

My Journey From DNA Test Skeptic to Participant

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Not so many months ago, I wrote a post about the “Wild West Marketplace” of consumer genetic testing. That description came from Laura Hercher, a highly respected genetics counselor whom I interviewed for the piece. Though our focus primarily was on the entertainment aspect of consumer DNA testing (tracing one’s ancestry, etc.), we also discussed the more serious health implications. I find the topic fascinating, but I thought I’d leave it there. Hercher pointed out many of the flaws and potentially false results that these tests may yield.

Then events made me take a second look at the feasibility of genetic testing in my own life: my sister died of pancreatic cancer, only 43 days after she’d been diagnosed. (Despite our grief, in view of the horror of this disease, we all realized that the brief time period was a blessing). Knowing that my mother had had bilateral mastectomies for breast cancer, and that her mother had died in her 50s from what we thought was liver cancer but could have been a metastasis from breast or other site, I began to think about my likelihood of developing a heritable cancer. 

And—even more to the point—I thought about my daughters. My gynecologist had told me years ago that I owed it to my daughters to find out if I carried variants in the BRCA1 and/or BRCA2 genes, which are associated with cancers of the breast and ovaries and—it turns out—pancreas as well. At the time, genetic testing cost more than $5000, so I never followed up on her recommendation. It’s worth noting here that the preponderance of women who develop breast cancer have no known risk factors.

As a former health writer/editor and continuing catastrophizer, I immediately felt I needed more information about pancreatic cancer. The heritable component ranges from 5% to 10%. But I knew that unlike some cancers, which are now being regarded as chronic diseases, pancreatic cancer carries a prognosis that is usually dire. The American Cancer Society reports that pancreatic cancer accounts for about 3% of all cancers in the US—and about 7% of all cancer deaths. That high mortality rate is because it’s nearly always diagnosed late, after it has metastasized. 

But I wondered: if I tested positive for the pancreatic cancer variant, were there any monitoring programs that might make it possible to find the disease at an earlier stage? And were there medical genetic tests that were more reliable than some of the “consumer DNA” ones that Hercher had discussed?

My research led me to Johns Hopkins, one of the medical centers doing considerable work in this field, and they did, indeed, have a surveillance study for those who’d tested positive for heritable pancreatic cancer. Knowing that gave me a sense of control in the midst of my personal concerns and while my sadness at the sudden loss of my sister was still quite raw. The people I spoke with there suggested that I have heredity genetic cancer screening done—and they recommended as a reliable company Color Genomics.

I contacted Laura Hercher, told her about my sister’s death and my family history, and sought her advice. She and a friend/colleague who specializes in cancer counseling agreed that my family history of breast cancer merited testing and was more likely to be associated with a positive test result than the pancreatic cancer: “likelihood of a positive test result there is 10% times 1/2, since there is a 50% chance you share any gene your sister had—but I would say less than that because the cancer occurred over a certain age.”

But she also included a link to an article suggesting that every pancreatic cancer patient should consider genetic testing. Although she had been skeptical about pancreatic cancer screening because there’s no proven way to do it, this article suggested that screening may be effective for both patients and families.

However, she added a caveat: “Understand that our track record with screening for cancer is pretty dismal. Many things that sounded great on paper didn’t result in fewer deaths…but still worth considering.”

She recommended Color Genomics, the same company that Johns Hopkins had suggested, so I felt confident with those dual recommendations from trusted sources. I’m not suggesting they are the only reputable firm, of course.  A friend who works in cancer education for oncologists said she’d heard positive things about Invitae, and I’m sure there are others as well. 

I encourage anyone who is considering this action to do some research and talk with medical sources you trust.

I spoke with my physicians. My primary care physician was skeptical, asking me to think through what I’d do with the results. Both my gynecologist and gastroenterologist thought testing was a good idea in my circumstances and offered to write the medical requests necessary to get the test (more on this shortly). My gynecologist said that although many of her patients who test positive for these mutations opt to have their ovaries removed, if I chose not to do so, I could have half-yearly ultrasounds and Ca-125 blood work, which indicates the presence of cancer.

I also had intense interest in joining a pancreatic cancer surveillance study—for myself and my family, as well as to add to scientific understanding of the disease that took my sister’s life and is occurring with greater frequency.

But I had to think long and hard about my mental mindset. Which way would I worry more—if I had the test and received positive results, or if I didn’t have the test and was left to wonder? Of course, as Hercher had stressed in my interview with her, and we all should keep in mind: testing positive for a cancerous genetic mutation does not necessarily mean an individual will get that cancer, and testing negative doesn’t mean that individual won’t. We’re advancing our knowledge of genetics all the time, but so many other variables may play a role in specific cancers—diet, lifestyle issues, environmental aspects, and plain dumb luck among them. 

I also did some due diligence: checking resources from the American Cancer Society, the U.S. National Library of Medicine, and the National Cancer Institute. The latter carried this caveat about using Direct to Consumer (DTC) genetic tests:

“Even when people have DTC genetic tests for gene variants that are known to be associated with inherited cancer susceptibility syndromes, there are potential risks and drawbacks to the use of DTC testing. For instance, some DTC genetic tests look for variants in the BRCA1 and BRCA2 genes that are associated with Hereditary Breast and Ovarian Cancer Syndrome (HBOC). However, this testing looks only for three specific variants out of the thousands that have been identified. Therefore, someone could have a negative result with this kind of test but still have a harmful BRCA1 or BRCA2 gene variant that was just not identified by that test. In particular, without guidance about the most appropriate genetic testing to do and interpretation of the genetic test results from a knowledgeable health care provider, people may experience unneeded anxiety or false reassurance, or they may make important decisions about medical treatment or care based on incomplete information.”

This is an important reminder that if you opt for inherited cancer genetic testing, you must be cautious about the source you select.

Ultimately, I couldn’t get past the idea that if I didn’t get tested, I wasn’t doing everything I could to protect my daughters. What they did with the information would be their decision, but I felt I needed to get it for them.

I bought the Color Heredity Cancer Test from Amazon for less than $200. It tested for 30 known gene mutations associated with breast, ovarian, pancreatic, stomach, colorectal, and uterine cancers, and melanoma. 

Here’s where the doctor issue arose. My physicians were right that a doctor’s authorization was needed, though that information wasn’t provided on Amazon or on the Color site—until I registered to proceed. Then I was told that I needed my doctor’s approval. Color company representatives were accessible by phone and said that since I didn’t have that approval, one of their doctors would review my personal and family history and the final results at no extra fee.  I also knew a genetic counselor would be available for me to talk with once I received my results.

It was time to act. After reading the directions not to eat, drink (even water), smoke, or chew gum for 30 minutes before providing the saliva sample, I followed the three simple steps as described: 1) Activate your kit online; 2) Provide your saliva sample [tube included, and a clear video available to answer any questions]; 3) Return kit via the US Postal Service. 

I was promised results within four weeks. I then did an amazing thing for a catastrophizer: I put all thoughts of the test and its implications out of my mind and didn’t agonize at all.

Two weeks later, an email arrived informing me that my test results were attached. I felt fortunate that the timetable was earlier than stated: I didn’t have time to anticipate the arrival.

I took a few deep, cleansing breaths, relaxed my tense shoulders, and opened the email.

I had tested negative for all 30 genetic variants. 

I breathed deeply again—this time with considerable relief—read all the disclaimers (which I knew: results meant no guarantees one way or the other), and decided that I’d avail myself of the talk with the genetic counselor just to see whether there was additional information I could learn. 

The woman I spoke with said my findings “didn’t give us much insight.” There was a possibility, she said, that my mother had a genetic mutation that I didn’t inherit—or a gene that hasn’t yet been identified as playing a role in these diseases. 

And she observed that since new genetic information is becoming available all the time, it’s probably a good idea to be tested every two to five years. That recommendation struck me as having a bit of a marketing tinge. 

As far as I can see, I’m done now. I’m grateful for the results, which mean I won’t have to worry about what I might have passed along to my daughters in this regard. And I won’t need extra monitoring myself—or to enter into a pancreatic cancer surveillance program.

Time to remind myself of mindfulness meditation: not to regret the past or worry about the future—just savor the present, each and every minute of it.

How does all of this strike you? Aside from ancestry testing, if you know you have a family history of cancer, have you, would you, will you consider cancer heredity genetic testing for future medical issues?  If so, under what circumstances? (I certainly understand the thinking of those who choose not to know.)  Your insights, opinions, and stories are, as always, most welcome.

Annie

 

Navigating “The Wild West” Marketplace of Consumer Genetic Testing–and Other Needed Information About Our DNA

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In an article in The New York Times Sunday Review, genetics counselor Laura Hercher described a man named Matthew Fender, who—after searching for heredity data through 23andMe—had placed his genetic test results into Promethease, a DNA search engine that probes such data for variants cited in the medical literature. 

Fender had sought to learn his risk for developing a pulmonary embolism, the condition that had killed his sister, a seemingly healthy young woman of 23. The report didn’t mention that, but it did provide the alarming news that he carried a mutation (PSEN1) strongly associated with early onset Alzheimer’s, as well as two copies of a gene variant (ApoE4) that indicates greatly increased chances of developing late-onset Alzheimer’s.

After getting no satisfactory guidance from his primary care doctor and other professionals, Fender checked out a competing genetics company, Ancestry DNA,  to see what his results there would say about the PSEN1 variant. They said nothing. He then persuaded his doctor to order the test, which proved negative.

End of story for Fender, although he said the experience led him to improve his diet and to consider using his technological skills to develop an app to assist people with dementia through voice-activated devices such as Siri and Alexa.

It’s worth noting that both companies claimed their tests were 99.9% accurate. Yet a 23andMe representative told Hercher that “a 99.9% accuracy can still mean errors.” And apparently, not every variant in their chip is even validated for 99.9% accuracy.

“The direct-to-consumer genetic testing marketplace is a regulatory Wild West,” wrote Hercher, who is the director of research at the Sarah Lawrence College Graduate Program in Human Genetics.

She’s also the host of an informative and entertaining podcast, “The Beagle Has Landed,” (named after Charles Darwin’s ship—not Charles Schulz’s Snoopy), designed for both professionals and “curious patients,” according to its introductory press release. One of her interviewees was Matt Fender.

Hercher explained that FDA Commissioner Scott Gottlieb announced in November a new regulatory approach that will allow companies like 23andMe to market some tests to determine health risks without premarket review. That change, Hercher observes, “is expected to usher in a rapid expansion of the consumer genetics industry.”

That means we consumers will need to better prepare ourselves to function in this new ”Wild West” by getting a better education on the important topic of genetics and the role it plays in our health—even as the field itself is changing all the time.

With that backdrop,  I spoke with Hercher to elicit her opinions on how to view all these genetic data at this stage. 

First, to her, the quest for information about one’s heritage, which she calls the “ancestry craze,” is a “mixed bag.” The positives she underscores are that people enjoy and are intrigued by learning about their forebears, and the process brings science and genetics into people’s lives.

But when people ask her if these quests yield legitimate information, she responds: “It’s accurate-ish. People think of this as their genealogy, but once you get past Mom and Dad, there’s a lot of randomness—you could inherit something important, or not.”

“People like to tell a story they can understand, a narrative that can explain why people turned out certain ways. Genetics also tells a story, but the risk we run is that when hearing it, we put aside other stories—involving culture and heritage, for example.  It’s very hard to weave it all together.”

If we’re interested in our predecessors’ story, then their story is ours, she notes, and that’s valuable to us. “Genes are a part of that, but not all of it. Even among siblings: one person could have 34% Southern European heritage, while his brother registered 15%. Would that make sense? No. The tests don’t gather with that level of precision.”

Hercher analogizes a swimming pool, with some blue substance for African ancestry, red for Chinese, etc. “The testers scoop a sampling from a spot of genomes into a net, and they’ll get red, green, yellow,” she says.  “Different tests reach down and get the same mix, but it’s not identical.”

To Hercher, the ancestry tests also tend to encourage a kind of tribal thinking and ignore the overriding message: 99% of our DNA identifies us as human and is genetically shared among us. “The DNA story is our commonality as a people—as well as with other living things. I wish these companies presented the data in a way that made that clear.”

And this commonality has great implications for the subject of race. “No quality geneticist will tell you that the concept of race does a good job of describing our shared genetic ancestry. Race isn’t a scientific grouping; it’s defined culturally. There’s more mixture within groups than between groups.” In a point that is probably obvious to all but the most rabid white supremacists, she says: “Racial purity is a myth.”

Those in the genetics field are disturbed by the current efforts to bring back eugenics, or “scientific racism,” which was once believed even by serious scientists who felt they could, by controlled breeding, create an increase in desirable heritable traits and a decrease in undesirable ones, thereby improving the human race. 

The concept was easily manipulated and became discredited after its use by the Nazis in Germany. “Now all these things are widely talked about,” Hercher laments. “The white nationalist movement has adopted the language of hate ideology and put a scientific gloss on it.”

This is the background for the hot water that Massachusetts Senator Elizabeth Warren has gotten herself into by taking a DNA test to prove her Native American ancestry. With this action, critics say, the possible 2020 Presidential candidate has played into the concept of “racial science”–validating the alleged link between blood and race, which The New York Times calls “a bedrock principle for white supremacists and others who believe in racial hierarchies.”

That’s not, I trust, the way most of us view genetics. We may remember how we were introduced to the subject in school: with Gregor Mendel and the 29,000 pea plants he cultivated that formed the foundation of the field. But even among the experts, “we never knew how complicated heredity is,” Hercher says. Single gene inheritance, such as blood type, is fairly straightforward and rare—as are diseases attributed to a single gene, the so-called “Mendelian diseases,” which include sickle cell disease, as well as cystic fibrosis, Huntington disease, muscular dystrophy, and a few others. 

Most of genetics, Hercher stresses, is more multi-layered. Heredity, and the traits and illnesses that are in our DNA, involve the interaction of genes with both our external environment and the internal environment comprised of our hormones, metabolism, and other factors. So when we find out we have certain genes—and their variants and mutations—there’s no straight line to determining how our bodies will deal with their existence.

One important issue that stirs debates among geneticists involves ApoE4—the gene that denotes a higher risk for Alzheimer’s and carries both individual and societal implications—for care and economics—as our population ages. Approximately 25% of Caucasians carry this gene, but Hercher points out that an individual at somewhat increased risk may not develop the disease; while someone with decreased risk may still get it. 

And currently, without a cure, that raises questions. “There’s a faction in the genetics counseling community that says we have no business giving out that information,” says Hercher. Indeed, when Matt Fender initially sought guidance from his primary care doctor, Hercher reported in her Times article, the doctor responded: “What the heck do we do about it, once we know, other than create high anxiety?” However, says Hercher, “a growing faction says that whether or not to provide the information is not really our call.” In other words, it’s the patient’s decision.

So if we’re deciding to search out our ancestry–or to be tested for a possible disease– the important thing for us, the consumer/patient, is to seek education before we even consider being tested. 

How will we regard the potential results? Do we need the information to inform our choices about health decisions that must be made—before a pregnancy, for example, or to assess our odds of developing certain cancers?

On such matters, Hercher stresses, both factions in the genetics counseling community agree: if the information is to be given, good counseling should be involved to help patients think through the implications—and then to support them once they’ve decided whether or not to act on the findings.

What do you think? Have you had any experiences you’d like to share? Please enter them in the Comment box near the bottom of this post.

Annie

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OK. The Dems Won the House. Now What?

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Well, there really was a blue wave—reportedly the greatest turnover since 1974—and a number of races remain too close to call or subject to a recount. These victories are especially impressive because of the gerrymandered districts and increased state restrictions that led to long lines at the very least and disenfranchisement of numbers of voters, mostly people of color. For a detailed look at what voters faced, read What It Takes to Win, published by the Brennan Center for Justice in October. 

As I stated in my last post, I view this not as a partisan issue—but as a critical win for our democracy. Unless/until the Republicans become better stewards of their Constitutional oaths, or are replaced by a new political force more willing to seek compromise for the good of the people, I hope Americans will continue to shun them in large numbers.

However, one of the consequences of this election was the defeat of some of the most moderate Republicans, increasing the likelihood that the party will become even more intransigent. 

And so, although I’m grateful that the Democrats can put the brakes on many of President Trump’s chaotic, sometimes horrific actions, I see reason for concern that to accomplish anything on the substantive issues needed to show voters they are delivering and to hold their majority, the Democrats face an uphill battle. 

Healthcare was the most important topic to voters according to exit polls, and the primary topic for many victorious new Representatives. Will even the hyperpartisan Mitch McConnell, who will face reelection himself in 2020, get the message and be willing to compromise—even if he’s likely to face a primary opponent to his right?

In essence, the Democrats will just have to forge ahead, showing the public where they want to go. Economics must be in the forefront. On the critical issue of income inequality, Michael Tomasky’s Op-Ed, The Democrats’ Next Job, which appeared in The New York Times days before the election, provides a terrific roadmap. 

Tomasky analyzes the void in the Democrats’ overarching message over the past several decades, and his prescription for the path forward is one of the clearest, most cogent, and sensible arguments I’ve read. Here are his opening paragraphs, and I quote him further, but I recommend the entire piece.

“Win, lose or draw on Tuesday, the Democratic Party will almost immediately turn its focus to the next presidential election and the fight between the establishment center and the left wing. But while the Democrats have that argument, they must also undertake the far more important task of thinking about what they agree on, and how they can construct a story about how the economy works and grows and spreads prosperity, a story that competes with—and defeats—the Republicans’ own narrative.

“For 40 years, with a few exceptions, Democrats have utterly failed to do so. Until they fix this, they will lose economic arguments to the Republicans—even though majorities disagree with the Republicans on many questions—because every economic debate will proceed from Republican assumptions that make it all but impossible for Democrats to argue their case forcefully.”

Tomasky eviscerates supply-side economics and then provides “the affirmative case for the Democratic theory of growth.” He stresses “expanding overtime pay, raising wages, even doing something about the enormous and under-discussed problems of wage theft.” And he stresses that the Democrats should say they make these arguments not “out of fairness or compassion or some desire to punish capitalists.

“We want to address them because putting more money in working- and middle-class people’s pockets is a better way to spur on the economy than giving rich people more tax cuts.”

Democrats, he adds, “should defend this argument because it’s what more and more economists argue and because it’s what Democrats believe.”

Importantly, he points out that Democrats who vary politically, such as Senator Joe Manchin of West Virginia and Representative Raul Grijalva of Arizona, can agree on this issue.

 “They’re both Democrats for a reason, and presumably that reason is they think government can be a force for good in people’s lives. So, if Democrats think it, they should say it. 

He is thereby offering a unifying position that is essential if the Democrats are to avoid defeat due to factionalism.

Tomasky accurately points out that this strong Democratic response to supply-side economics needs a name. I think the name is extremely important in garnering interest and enthusiasm for the effort. However, the one he mentions in passing, “middle-out economics,” leaves me cold. 

It does have the advantage of brevity, and Democrats are always accused of failing the bumper sticker test with their lengthy explanations of positions, but it’s neither intuitively comprehensible nor catchy. A considerable effort should be made, bringing in some of the most talented wordsmiths available, to arrive at a phrase that is concise and inspiring. 

If you have suggestions, please add them to the Comments section, and I will forward them to Tomasky. You can also forward them to your own representatives, explaining the context.

Two more takes on implications of the election results, both hot-button issues.

1. The speaker. I know all the arguments against Nancy Pelosi, and though I understand them, I think this is absolutely the wrong time to replace her. She’s the most powerful woman in the US government—and she has done her job with great success. She’s a prodigious fund-raising and vote-counter whose experience is essential in these wacky times. 

Plus, health care has been the cause of her life. Reports are that she had planned to retire after Hillary Clinton’s election, so I don’t think she’s doing this for her ego. I expect her to be an effective mentor for the newly elected women in her caucus and to seriously broaden the leadership bench of the Democratic Party. 

2. Impeachment. I fully support the Democratic House committees’ investigations into all the matters that the Republicans stonewalled or distorted. But the Democrats have an important balancing act to perform between conducting investigations and trying to enact meaningful legislation. 

As much as I would love to see the President removed from the Oval Office (and VP Pence investigated for his apparent lies), I oppose impeachment efforts at this time. Unless the Mueller probe’s findings or other investigations persuade enough Republican Senators that they must act, at last, ensuring conviction by the Senate, impeachment by the House will simply play into Trump’s hands, allowing him to play the victim, making him act even more erratically, and possibly strengthening his chances of reelection.

Ultimately, these issues demand the continued and enhanced participation of all of us in our democracy by our ongoing engagement with our elected representatives on all levels. 

Please let me know your thoughts on any or all of these issues. And please don’t forget to share, award stars below my name (one awful—five excellent), or like this post (if you’ve signed on via WordPress). Knowing you’re reading and considering these posts is very important to me. Thanks so much.

Annie