Our most active teen member attended a workshop on Adolescent Drug Cultures and Current Drug Trends to, as she said, see whether they pointed the finger at kids who died their hair in odd colors. She emerged from the workshop satisfied that they weren’t profiling so crudely, and dismayed by the array of drugs presented, with thoughts on how scary it might be to be the parent of a teen. She later attended a workshop on Behavioral Health Needs in the LGBT Communities. Joel went to a workshop on stress management, which he said had a lot to say about reducing stress by setting appropriate boundaries, and some others in the group went to a workshop on weight management.

I decided, after all the pain of chemotherapy, that I would attend a workshop on pain management. There Donald Sharps, MD began with a picture of the opium wars, and set forth the goals of the workshop.

1. Describe how medical management of pain has changed in the last 10 years.
2. Describe patients’ and doctors’ rights, and how to balance them.

He began with a description of the biology of pain, including:

1. “nocioceptive” pain (injury, inflammation, muscle tightness/spasms) vs. “neuropathic” pain (referred and phantom)
2. acute, subacute, and chronic
3. characterizations of pain, such as intermittent, intractable, referred, burning, dull
4. diagnoses: phantom, cancer, vascular, arthritic, nerve, muscle, fibromyalgia, etc.
5. anatomical: where does it hurt?

For neuropathic pain, antidepressants and anticonvulsive medicines can be helpful. (Neuropathy was one of the three big side effects that I experienced from cancer treatment, the others being the various digestive effects and fatigue. Neuropathy and fatigue take some time to go away after the treatment, and there’s the possibility that you may not fully lose these.)

There was more about the biology of pain, which I won’t blog right now in the interest of actually getting this post done before I need to leave for work. But I’ll note that it included a caution against concluding that a particular abnormality in an X-ray is the cause of the pain; in one study at Hoag Hospital in Newport Beach, 2/3 of men and women with no back pain showed such spinal irregularities.

We got a history of the use of opiates: the opium wars, opiates in patent medicines, heroine as a treatment for morphine addiction (and coughs). 23% of people on SSDI are on disability due to chronic musculoskeletal pain.

And here we got to what has been happening in pain treatment in the last ten years, which turned out to be not so much about medical advances in pain management as about the difficulties of balancing the risks of underprescribing opiate painkillers vs. the risks of overprescribing them. Not long ago, there was concern that, for fear of feeding addiction, doctors were underprescribing pain medication, particularly for the terminally ill. So, in California, we passed AB 487 in 2001, but at the last minute “end of life” was modified to include “intractable pain.” “End of life” pain treatment should be an easy call; give the patient as much pain medication as he or she needs. But “intractable pain” is a fuzzier concept, and so now we’re seesawing the other way. There has been an increase in drug overdose deaths among teenagers in Orange County. The video “Behind the Orange Curtain” examines this drug overdose epidemic. So, after AB 487 brought into existence boards to consider undermedication for pain, in 2013 legislation has been proposed to raise the pain and suffering cap on malpractice to stop overprescription.

Here there was more discussion of legislation, including the California Intractable Pain Act of 1990 and the California Pain Patients Bill of Rights. I’m going to skip this legal part.

Opiates are useful for acute pain. For subacute pain, you may want to keep a few opiate pills around but find a cause. For chronic pain, it’s best to look for other pain management. Dr. Sharps discussed other methods of pain management, including: heat, ice, anti-inflammatory medicine, local intervention, NSAIDs (I’m not sure why I have this in my notes separate from anti-inflammatory, since it’s a kind of anti-inflammatory), Tylenol, anti-convulsants, topical treatment, antidepressants, and coping skills. Pain and psychiatric conditions are comorbid in up to 2/3 of chronic pain (this raised the question from the audience of which comes first).

The American Pain Society and the American Academy of Pain Medicine commissioned a review of evidence on chronic opioid prescriptions, and came up with 15 guidelines for opiate management in chronic non-cancer pain. We got a sample agreement, which includes a requirement that the patient get the prescription from a single pharmacy and things that the prescribing physician can do to monitor for abuse. We also got a sample pain progress notebook, where you monitor your pain daily. (I’ll note here that people with bipolar disorder are encouraged to do a similar thing with moods, called a mood chart; Joel does this regularly. I didn’t monitor my pain daily while going through treatment for cancer, though I did keep notes on my symptoms and side effects so I wouldn’t forget to share them with my chemotherapy nurse on my transfusion appointments, something I definitely recommend, since counting on your memory while going through chemotherapy may not be optimal.) And we heard about making a pain plan (What is your goal? What will your restored life look like?).

The next workshop I attended was on Implementation of the Affordable Care Act in Orange County, and included Clayton Chau, MD (a regular at this conference), Ilia Rolon, and Maria Carillo from CalOptima, a county organized health system that administers health insurance programs for low-income families, children, seniors and persons with disabilities in Orange County. Here we heard about the changes made by the Affordable Care Act (some already in effect and some which will start in 2014) and what the county is doing to get the word out to people affected.

These changes include increased access and new consumer protections. Pre-existing conditions, recission, and the lifetime cap dollar amount are eliminated, and there’s a new appeals process.

That staple of pundits discussing the ACA, the question of whether it bends the cost curve, was not discussed, but we did get a defense of the individual mandate, as the only way to make the increased access to coverage provided by the act work (otherwise, “young invincibles” would pass on coverage, and costs would spiral up).

The main focus of the talk was discussion of the Medi-Cal expansion (Medi-Cal being the California version of Medicaid) and, this being a mental health conference, parity, the requirement that mental health conditions get treated the same as physical ailments.

I’m out of time, so for more information see CoveredCA.com

In Religious Education yesterday, before Meeting for Worship, we discussed Matthew 25, a series of stories that anticipate a judgment. First comes the story of the wise and foolish virgins, where the virgins who haven’t supplied themselves with oil lose out. Second, the parable of the talents, where the servants who increase their talents win, while the one who buries his loses. And finally, the separation of the sheep and goats, in which we learn that the real way to prepare for judgment is to feed the hungry and visit those who are sick and in prison, for “as you did it to one of the least of these my brethren, you did it to me.”

“As you did it to one of the least of these” is one of those gospel lines that sticks in my head, comes to mind often, that stands as a guiding light to how I live my life, whether I live up to it or not. But what of the rest of the chapter? As we discussed it, our reactions were varied. Liberal Quakers are uneasy with stories of harsh final judgment. And for what are the people being judged? Aren’t the wise maidens a little stingy, not to share their oil? Is the tale of the master who gives out the money simply another story in which those that have, can spare enough to risk and get more? (I suggested that, if the servant who buried the talent thought he had a harsh and unjust master, perhaps his best answer was to try to organize other workers like himself, to unionize.)

Some, though, found meaning in the parables by seeing the objects in the stories as more inward things. If the oil with which the virgins must prepare themselves is wisdom, then perhaps there’s a limit to how much the wise virgins can give the foolish ones, and a point where they must supply the oil themselves. “Talents” in the story may be money, the word’s resemblance to “talent” after multiple translation a happy accident, but the story is enriched if you imagine the other meaning. And some found more meaning in stories of judgment if they saw the judgment, not as between different people who are goats and sheep, but between the parts of yourself that you can keep and the parts of yourself that you need to learn to give up.

23andme tests some BRCA1 and BRCA2 variants; Myriad tests, to the best of my knowledge, for all known BRCA1 and BRCA2 gene variants. There are two aspects to this. One is that it really is more expensive to test for all variants (whole genome sequencing costs way more than 23andme’s $99 test, and can’t currently be offered at 23andme’s price). The other is that Myriad owns patents on testing for certain important BRCA genes, and 23andme can’t legally do the same BRCA testing that Myriad does, at this time. (I’m not sure exactly how this works legally; will the ability to test for the genes go generic at some point in the future, the way pharmaceuticals do?) Myriad has a number of cancer specific tests, which test for the genes that increase risk most for a particular cancer. There is one for hereditary breast and ovarian cancer, one for hereditary colon and uterine cancer, one for hereditary colorectal polyps and cancer, one for hereditary melanoma, etc. If you have a likelihood of cancer in your family, you see a genetic counselor first, and then get referred for the Myriad test. If your family risk is high enough, and depending on your insurance company, the test may be covered by insurance. Likely, with Angelina Jolie’s family risk, her test was covered (but then, she has the money to pay thousands of dollars for the test anyway). All of the tests cost thousands of dollars.

I didn’t, in this answer, talk about how much of Myriad’s higher cost is due to actual increased cost in looking at all the gene variants for the cancer genes they cover, and how much is due to their being able to charge more because they have patents on certain tests and don’t have competition. The reason is that I don’t know the answer. (Note that the test that I would have gotten from Myriad if I had met Amsterdam criteria for Lynch syndrome also would have cost thousands of dollars, and I don’t know that Myriad has patents on those genes.) Blogs and articles have been debating the matter, though, in the wake of Angelina Jolie’s revelation, as a case regarding the limits of said patents makes its way to the Supreme Court (Association for Molecular Pathology v. Myriad Genetics), so here are a few links:

In case you somehow missed it, here’s Angelina Jolie’s op ed.

23andme’s blog points out that its test only looks at three variations of BRCA1 and BRCA2 (along with some other genes more weakly associated with breast cancer risk), and that the $99 test should not be considered diagnostic.

The blog of the Stanford Center for Law and the Biosciences gave an oral argument recap last month on AMP v. Myriad Genetics.

… To briefly recap the facts: In 1994, researchers at the University of Utah discovered that several mutations in the genes BRCA1 and 2 corresponded to a significantly elevated risk of breast and ovarian cancer. They patented various aspects this discovery, such as methods for using the sequence of these mutations to test for breast cancer, a kit to perform that test, and–now at issue before the Supreme Court–the “genes” themselves. In reality, the claims directed toward the genes were of a variety of types: the genes isolated from chromosome 17, the so called “isolated DNA” claims; the same genes as in the isolated DNA but missing their non-coding portions, or the cDNA (cloned DNA) claims; and primers, or short DNA sequences, 15 nucleotides in length, used to clone BRCA1 and 2. The researchers then exclusively licensed their patents to Myriad Genetics.

Out of concern, a consortium of BRCA researchers, labeled the Association of Molecular Pathology, in conjunction with the ACLU, filed suit against the PTO and Myriad Genetics to invalidate the patents. The district court had concluded that almost all of Myriad’s patents’ claims were invalid, but, on appeal, the Federal Circuit mostly reversed, affirming only the district court’s invalidation of one type of method claim. The parties petitioned the Supreme Court for certiorari in 2011, which, in 2012, the Supreme Court granted, vacated, and remanded in light of Mayo v. Prometheus. On remand, the Federal Circuit issued an almost identical decision, which the parties again appealed, and the Supreme Court again took up…

Here’s the full SCOTUSblog coverage on Association for Molecular Pathology v. Myriad Genetics, Inc.

Jesse Holland at Salon and Joseph E. Stiglitz at Slate argue for limits on patents related to testing for particular human genes.

Jon Healey at the Los Angeles Times discusses the background of the Supreme Court gene patent case.

Kevin E. Noonan at Patent Docs, a Biotech & Pharma Patent Law & News Blog writes on The Myriad Case and “Gene” Patents: Much Ado about Nothing?

Razib Khan asks what geneticists think of the Myriad gene patent case and gets some responses in comments.

Recently, we decided to vary our program by adding a discussion, once a month, of an article in Western Friend (so it will be two weeks Bible study, one week intergenerational activity, and one week discussion of an article in Western Friend). This week was the first of those discussions, and the article selected, from the Jan/Feb edition of Western Friend was Zachary Moon’s “The Balm of the Other” (not one of the ones put online). I slept in and got going slowly, but Peggy passed on to me a sheet of the queries that were used in the discussion, and I include it here:

If we talk only with those whose viewpoint we share, we have similar “blind spots” that reduce what we can learn from our conversations with one another. We may be able to address the questions that arise and find answers only if we step outside of the certainty that we are RIGHT. Our Quaker practice of demonstrating silently, even in the face of open hostility, may mean that we are shutting our eyes and stopping our ears to the concerns of those we regard as “the Other.”

Am I able to listen carefully to the words of one I regard as “Other,” one who holds a viewpoint or conviction I am opposed to or hold to be “wrong” or even “evil”? Can I do this with the intention humbly to understand, to learn and to accept what I learn?

Can I recognize in someone opposing my stance on war a spirit like my own, one aroused to act by deep concerns and convictions that I may not be aware of?

Can I offer myself willingly to step over supposed lines of difference and become a listener and a learner, embracing the Other as one close to me, even one with me, in the Spirit?

I find these questions difficult. I look at the first question, and the first thing I think of, when I see the words ‘one who holds a viewpoint or conviction I am opposed to or hold to be “wrong” or even “evil”,’ is the Greek neo-Nazi political party Chrysi Avgi, or Golden Dawn. I consider their convictions evil. I cheered last month when Greek islanders rejected Golden Dawn’s free food distribution, because I feel that free food from a group like Golden Dawn comes with strings that are like chains; I don’t want neo-Nazis building their cause, in Greece or anywhere. I am not interested in humbly learning from Golden Dawn. I realize that there’s a risk of spreading the group of people we aren’t willing to learn from too far, till one half of the country sees the other’s views as evil and vice versa, but aren’t there some views I simply want to marginalize? Golden Dawn members, too, have that of God in them, but as Golden Dawn, I don’t see where they have anything to teach me.

Then I thought of the Westboro Baptist Church, and how some of Phelps’ granddaughters have left, and that the story one of them told involved a gay man who had become friends with her and simply met with her outside the context of the church, not humbly listening to “God hates fags” talk (the Westboro Church’s version would alienate even the most trying-to-live-celibate-while-struggling-with-same-sex-attraction person sexually drawn to his own sex), but also for the most part not arguing it, and rather meeting with her as a person outside that context. Not that that’s always the way to go, but in this case, it seems to have been.

The second question is easier to say yes to. My grandfather died fighting against the Axis in WWII when Italy invaded Greece. My father lived under German occupation as a child, and welcomed the Allied tanks (he acted as interpreter for American soldiers). One of my cousins served in Afghanistan. It’s easy for me to see both pacifism and belief in war as a response to attack as coming from deep concerns and convictions. It’s harder when, as in the rush to war in Iraq, the war seems particularly unnecessary and foolish. I was dismayed to see so many people I otherwise respected join that bandwagon. But I didn’t stop seeing them as people with deep concerns and convictions of their own; I simply thought that they were coming to believe things about weapons of mass destruction that didn’t fit the evidence. Still, there’s a point where this question becomes challenging as well, and for me that point is torture.

For the third question, what I’ve found that helps is finding people on the other side of the political fence who seem most reasonable to me, and listening to them. That and looking for the areas where I have common ground with people I may strongly disagree with on something else.

FCNL, for those of you who don’t already know, is the Quaker lobbying group in Washington DC, and the oldest religious lobbying group there. It was founded in 1943, to lobby for recognition of conscientious objectors, and, that task accomplished, decided to stay in existence to lobby for other issues that concerned Friends.

Before the talk, I met someone from the Citizen’s Climate Lobby, a nonpartisan group lobbying for legislation to address carbon emissions and climate change. Here, for example, is their carbon fee and dividend FAQ. Right now, the local Orange County chapter of this group is organizing meetings between constituents concerned about climate change and our local Congressional Representatives. I also learned, later in the meeting, about the Orange County Interfaith Coalition for the Environment.

Stephen Donahoe discussed reasons why it is critical to act on climate change, legislation that has been proposed now or may be proposed soon, and why we need to keep faith that our action can make a difference, and not be cynical and convinced that nothing can be done in Washington. He also passed out some literature from FCNL, so my summary is going to combine that and the notes I took in the form of live tweeting some of the talk.

Reasons why climate change is critical: We are already experiencing resource wars fueled by climate change. An example is the water wars in Kenys, in which the nomadic Turkana people of northern Kenya and the nearby Pokot and Samburu tribes have engaged in skirmishes that have killed over 400 people and are spreading across borders, leading to clashes with the Ugandan military in 2009. (Here I note that, on a larger scale, the Darfur conflict has also been fueled by water conflict as a consequence of desertification, and spilled across borders into Chad and the Central African Republic.) Climate change has also led to increased natural disasters and climate refugees. For example, in 2010, record-breaking monsoon rainstorms over the mountainous areas of northwest Pakistan caused massive flooding that covered almost one-fifth of the country.

Reasons to trust that we can have an effect: Donahoe gave as examples a Quaker high school group came to Washington to lobby their Senator on climate change and some lobbying of Senator Grassley on the Pentagon budget done by some of his Iowa constituents. (There were other examples, but these are the two I remember.)

Lobbying that FCNL has done: This includes teaching students to lobby, joint lobbying with the Evangelical Climate Network, and joint lobbying with communities of color.

Legislation currently under consideration:

The Shaheen-Portman Energy Efficiency Bill is a bipartisan bill to promote more energy efficient buildings. The biggest emissions producer in the US is not cars but buildings, so energy efficient buildings could significantly reduce carbon emissions.

In the long term the FCNL supports a carbon tax. Boxer and Sanders have a carbon tax bill (which doesn’t currently look likely to win Republican support). Someone from Rhode Island has five people in Congress working on another climate change bill. (I didn’t manage to make a note of who from Rhode Island is doing this, I guessing maybe Senator Jack Reed? Since he turns out to be the one who chairs the Appropriations Subcommittee on Interior and Environment.) Cantwell and Collins may introduce a cap and dividend bill (which would be bipartisan, since Cantwell is a Democrat and Collins is a Republican.

Here is the section on environment and energy legislation at FCNL’s web site, and here is what they have to say about A Little Light for Climate Change Legislation.

A biographer of Keynes’ wife reports that, gay though Keynes was, he and his wife loved each other very much and had hot sex, something that warms my bisexual heart.

Karl Smith, at Forbes, in Childless Keynesians And The Future They Made, has a few things to say about deficits and surpluses.

John Maynard Keynes on Economic Possibilities for Our Grandchildren. (Hey, that’s my generation! It looks as if he was a bit optimistic.)

On another note, David Weigel quotes an earlier post of his about Benghazi:

The “stand down” theory originated in an October 26 Fox News EXCLUSIVE (capital letters in the original), which reported that the CIA “chain of command” had “told the CIA operators twice to ‘stand down’ rather than help” besieged Americans. A complementary theory, advanced by the father of the murdered Navy SEAL Tyrone Woods, suggested that the White House had a “live feed” of the attack and sat shiva, doing nothing. Another theory, universally shared: The White House, led by people like UN Ambassador Susan Rice, was engaged in a massive cover-up.

and concludes that:

The first two theories remain defunct. A response team was sent to Benghazi; according to the State Department’s report, “the seven-person response team from Embassy Tripoli … arrived at the Annex about 0500 local. Less than fifteen minutes later, the Annex came under mortar and RPG attack, with five mortar rounds impacting close together in under 90 seconds.” Hicks doesn’t say that the CIA issued stand down orders, let alone twice. He says that a jet was never scrambled to fly over the city (which we knew) and that a second team, one that arrived too late, should have gotten there faster.

Thoreau finds his cranky heart warmed by the quote “The fallacy of the age of big data is that all data are interesting.” It’s a good quote.

Bruce Schneier on the privacy risks of Google Glass.

Cruise line: Holland America.

Itinerary: Puerto Vallerta, Loreto, Cabo San Lucas.

Fellow passengers: Though the sale of diamonds on the ship, right next to the casino, gave a certain air of luxury that suggested some people were very rich (who can afford a cruise and diamonds and gambling, all at the same time?), we wound up mingling with a fair number of middle class people (nurse, retired teacher), so not everyone is as rich as the diamond sales suggest.

Food: A buffet that included an ice cream bar and a seated dining room that included multiple courses were both included in the fare, and there were other restaurants you could pay for. Very good food.

On shore tours: It seemed every port had an opportunity to swim with the dolphins. We didn’t choose those tours (Joel calls it “swimming with enslaved dolphins,” and it’s a good thing we didn’t choose it, because by the time we went on the cruise he had a healing abscess on his back which prevented him from swimming), but did go on a variety of other tours: one with a Mexican cooking class, one with a Mexican fiesta and clambake, and a boat tour. We also wandered around all three towns, and Joel took photos.

Sea day activities: There were lots of them. We went to a computer class, participated in trivia contests till finally our team won one, saw a movie (Silver Linings Playbook), and I took a dance class (jive) and sang karaoke (“Bette Davis Eyes“). There was a gym onboard, where I used the rowing machine (we also exercised by going up and down the many flights of stairs), and we spent a lot of time in the library, where Joel edited his autobiography and read, and I finished two books, read part of another, and worked on the various jigsaw puzzles they set out.

For more, you can go look at Joel’s photos.

1. No more requiring women of all ages to ask for Plan B behind a pharmacist’s counter. Yay! Yay! While, as I said, I wasn’t all that concerned with the embarrassment argument against this requirement (much more embarrassing drugs, such a psychiatric meds, have to be gotten from a pharmacist because there’s a good medical reason for it that outweighs any embarrassment factor), I really, really dislike requiring people to get a time critical medication from the part of the store least likely to be able to stay staffed 24/7, and in a political climate in which some people are pushing to have pharmacists empowered to refuse to sell it and their employers not allowed to discipline them for that refusal. Also, having it out in the aisles makes it clearer that yes, guys can buy it for their girl friends.
2. Age at which you’re allowed to buy Plan B without a prescription reduces from 17 to 15.
3. Ruling that there should be no age restriction appealed.

Since it looks to me as if the age limit, to begin with, always had more to do with the age at which it’s OK to condone girls having sex than the age at which they can read the directions (if you’re old enough to buy and read the directions for Tylenol, you’re probably also old enough to do the same for Plan B), I suspect what the shift from 17 to 15 really means is “yes, sex between similarly aged teenagers of 15 or 16 is probably consensual, whether or not their parents want them doing it, but we’re not so sure about 13 and 14-year-olds.”

Thoughts? Discussion?

Gene Expression across Normal and Tumor tissue database.

Oncomine.

Whenever I see these searches, I wonder. Suppose something happened to suddenly make me newsworthy? What would people cull from the mix of LinkedIn, Facebook, Twitter, Youtube, Flickr, Google+, blogs (this one and the group blog), GoodReads, Ancestry.com profile, and other places I may have forgotten that make up my Internet life? What, to a stranger writing a news story, would be the story arc of my life, and what would be the key quotes that give insight into the essence of Lynn?

On one level, I know the answer. It’s the culprits, not the victims or the heros, who inspire this fascinated search. Sean Collier may have had a Twitter feed, but if so, we don’t know his last tweet. We don’t know his favorite Youtube videos, or what was on his Facebook wall. With the culprits (or the suspected culprits), we want to know why they did it, and so we scour their Internet trail looking for answers. For the heroes, we think we know why they did it (they were good, upstanding people), and so we leave their Internet trail alone. And for the victims, the moment chosen will be the most poignant, the one that tells a story of tragic loss. Of all the many little boy things done by Martin Richards, the one everyone will remember will be the hand written sign, “No More Hurting People. Peace.”

And so I know, in general if not in specifics, what would be said of me, had I been there, and died. I’d have gotten there by taking the trip with my husband to celebrate my 25th anniversary and my survival of cancer as a trip to Boston, rather than a cruise to Mexico, and the most likely the small part of the story line that covered my death would be something about that. And you’d get, from my blog and Facebook and Twitter trail, whatever line most succinctly fit the story line “brave cancer survivor gets killed by a terrorist bomb the day before her 25th wedding anniversary.” If I’d managed to say anything that sounded particularly poignant in the light of my death, perhaps something related to my survival of cancer last year, those words would be my epitaph.

Still, the question nags at me. We live so much on the net now that career articles warn us against leaving no traces, tell us that ghost programmers don’t get hired. For a few of us, that means branding, a carefully managed image that is both public enough to be found, and crafted enough not to raise red flags with employers. Facebook posts get set Friends Only (and we hope that prospective employers don’t ask to view that wall, though we’ve already made sure it contains no really embarrassing drunken photos), Twitter accounts and blogs directed toward suitable professional interests. For most of us, though, the messiness of our “real life” bleeds onto the partial views we let onto the net. And I follow a woman on Google+ because she has gotten into a circle of Women in Tech, and discover that she’s displaying her interest in Tea Party politics, her favorite songs, or perhaps that she also has a Pinterest board dedicated to crochet. And so the question, “What would the net say about you if we stopped that story right now?” becomes a version of the still larger question, “What story would someone tell of your life, if we stopped that story right now?”