Let’s Talk About Measles

There is an outbreak in the US. And it’s in California. And, more specifically, measles are in the county I live in. Patients have been treated for measles at the hospital where Jack receives chemotherapy treatment, even.

I’ve been really good about not freaking out, even though I have every right to freak out. I have no explanation for why I am not coming completely unhinged as the news reports more and more measles cases every day.

Both of my kids are in danger. Desmond, at 5 months, is too young for the MMR vaccine and chemotherapy has wiped out Jack’s immune system – including many, if not all, of the immunities he used to have. Jack attends public school and Dez goes to daycare. Jack won’t be able to get the live virus vaccines (MMR & Chickenpox) until a year post-treatment – so, March 2016. Dez will receive his immunizations after his first birthday in September (at least, I think that’s the case – Jack’s health status may delay that!).

Until then, it feels like my kids are sitting ducks.

I know there is a debate right now about keeping unvaccinated (by choice) kids out of schools. I am not convinced we can require everyone to vaccinate, but frankly, I am not arguing against making it mandatory to attend public school – it would certainly make me feel better to know that Jack was that much more protected against a nasty disease that could kill him while going about normal life.

At the same time, I can see the case being made that immuno-suppressed kids be kept out of school, too. I mean, the measles could kill Jack. So why wouldn’t I sequester him?

How can I do that, though? How can I take more away from Jack? He has missed out on so much over the last three years. He has fought so hard to beat cancer and to live as normal a life as possible. He missed half of kindergarten and first grade and so many other days of school, and it has had an impact on his educational performance, as well as his self-esteem. I don’t want to take more away from him!

Further, he’s in danger at places besides school. When I took him to the oncology clinic a couple of weeks ago, we were advised to put a mask on him while in the elevator because there were measles patients being treated at that hospital.

It hadn’t occurred to me that he would be in danger at the oncology office, of all places! And, COME ON! It’s 2015! Measles has no place being on the top 10 list of things I worry about!

In any case, have you ever tried to keep a mask on an 8-year-old? It’s near impossible for longer than 20-30 minutes. And what about a drooling, grabby 5-month-old? That’s just plain crazy-making! (It’s a fun idea for a party game, though.)

So, what I’m saying is…I’m relying pretty heavily on those around me to keep themselves – and us – safe. I’m relying on herd immunity to protect my kids from vaccine-preventable disease because I am powerless at this point.

And, unfortunately, there are many in my community that don’t even think of my kids when they refuse vaccinations. Instead, they think measles is not a big threat to them. They think a vaccine is more dangerous than the disease itself.

All I can think is…is this real life?

Write a Letter to Santa and Help Wish Kids!

Between November 7 – December 24, visit your local Macy’s store or Macy’s Believe online to submit your child’s letter to Santa and help make dreams come true for Make-A-Wish kids around the country. For every letter received through December 24, Macy’s will donate $1 to Make-A-Wish (up to $1,000,000).

Jack LOVES the idea of Santa. In prior years he has written Santa several letters, made him cards, even even built a shrine in his room. At eight years old, it seems that he might be starting to waiver in his devotion and questioning a bit more, but still – he wrote a letter to Santa this year, asking for a haunted house and asking that Santa respond if he got the message. He included his very own “return receipt,” which was a drawing of some toys and dashed lines to indicate where to cut.

LettertoSanta

Santa dutifully responded and Jack was beyond excited. He just knows Santa will come through for him.

David and I set to work looking for a toy haunted house. We didn’t find much, but we didn’t want Jack to feel let down by Santa, especially on the last year he’s likely to believe in him. So we bought a dollhouse and developed a plan to paint it, sand it, and turn it into something haunted. I was also able to find a “monster bucket” on (post-Halloween) sale so that should help us haunt the place up.

This may seem like a lot of effort, but Santa is just one small thing that adds magic to Jack’s life amid all the hardship he endures due to Leukemia. Make-a-Wish helped in this effort this summer, as well, when Jack was granted his wish for a TARDIS bedroom makeover. Jack is still delighted by his room and with the granting of his wish, we saw a happiness in him that we haven’t seen in a long time.

He's in love.

He’s in love.

This holiday season Macy’s is helping to bring magic to more kids with their Believe Campaign by working with the Make-a-Wish Foundation! This year marks the seventh year of Macy’s Believe campaign, which invites believers of all ages to drop off letters to Santa at any Macy’s store by depositing them in special, designated Santa Mail letterboxes. You may also submit your letter online at Macys.com/believe.

For each letter received by December 24th, Macy’s will donate $1 to Make-A-Wish, up to $1 million, to grant the wishes of children (like Jack!) with life-threatening medical conditions. Last year, Make-A-Wish granted the wishes of more than 14,000 children across the United States. A wish is granted every 38 minutes!

Here in the Bay Area, Make-A-Wish is working on granting the wish of 4-year-old Joysse, a girl from San Mateo who was diagnosed with Leukemia. For her one true wish, Joysse asked for a princess party complete with purple and pink decorations, a princess dress with a cape and crown, cake and ice cream and more! She is so excited that she asks her mom, Gabriela, about it every day. Her party is scheduled for January, but as a surprise, Macy’s will be helping her prepare for her wish with a very special celebration at the San Francisco Union Square location.

To help kids like Jack and Joysse this year, make a trip to Macy’s or visit them online to submit your child’s letter to Santa. It’s totally free for you and yet you will get the satisfaction of knowing you’ve helped bring some magic back to the life of a child with a life-threatening illness!

stockings

I was selected for this opportunity as a member of Clever Girls and the content and opinions expressed here are all my own.

CA Prop 46 – A Flawed Bill With Negative Impacts On Healthcare

Disclosure: I attended a luncheon hosted by No On 46 in order to learn more about this bill. I was not provided any compensation for this post, and all opinions expressed are my own based on my personal healthcare experiences.

Nearly a month ago, I attended BlogHer ’14 in San Jose. Typically I come home from BlogHer energized and inspired to write, write, write. And I did have some of that, but mostly my mind has been focused on the impending birth of my baby (ANY DAY NOW!).

With that said, I attended a number of healthcare-focused panels during BlogHer. After working* in a hospital in a rural area for several years and then spending an extensive amount of time in hospitals with my son while he’s been fighting Leukemia, I’ve learned a few things about the healthcare system. Still, I didn’t realize how relevant this bill was to me until I learned more about it at BlogHer.

If you’re a California voter, I hope you will take the time to read this post and learn more about this bill (the full text of which can be found here), as it will have impacts on everyone in the state who utilizes the healthcare system. And then, of course, cast your vote in November!

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The three main components of California Proposition 46 are:

  • It raises the cap on the “pain and suffering” portion of medical liability rewards from $250,000 to $1.1 million.
  • It requires both random drug and alcohol testing, as well as routine testing of physicians who are involved in any medical procedure that has an associated “adverse event.”
  • It requires practitioners and prescription drug providers to consult a database prior to prescribing controlled substances to patients.

The rationale behind this bill is that it will deter or prevent prescription medication abuse by patients who “doctor shop” in order to get controlled substances prescribed to them, and hold medical care providers accountable for any fallout events that could result from medication and drug abuse (by both physicians and patients). This is supposed to increase patient and public safety by decreasing the number of adverse events associated with healthcare procedures, and thereby decrease the number of lawsuits. The bill was created in response to an incident in which two children were killed by a driver under the influence of alcohol and prescription painkillers. (Please take the time to read that article – it will provide a lot of context for the motivation behind the bill. After reading it, I would ask that you contemplate whether this bill would actually have prevented the death of those children.)

On the surface, the bill sounds like it addresses a number of issues and would save lives. But, as most of us voters know, there are many bills that make it onto the ballot every year that aim to do something good, but fail to deliver due to flaws in practical application. Prop 46 is one of these flawed bills.

I’ll take this point by point and offer my perspective, as both an individual who has worked in the healthcare system and someone who uses that system extensively, on why this bill is significantly flawed and would actually end up doing more harm than good here in California.

1. It raises the cap on the “pain and suffering” portion of medical malpractice rewards from $250,000 to $1million.

If the cap on what can be awarded to those who file a lawsuit against medical practitioners and hospitals is raised, that additional award money has to come from somewhere. Medical malpractice suits WILL happen, and to accommodate the increased amount of funds that will be awarded, providers and hospitals will need to increase their liability insurance coverage. This will cost them more, and they will pass the cost onto patients by increasing the price tag on procedures or insurance premiums.

What I know from processing contracts and facilitating physician recruitment in a rural California hospital is this: many physicians, particularly specialists, end up closing their private practices due to the high overhead of liability insurance. They move to practicing medicine in HMOs or they leave the state. Hospital systems can negotiate better insurance rates for liability insurance due to the bulk amount they require – independent physicians do not have that bargaining power and end up paying more for liability insurance (even if they don’t end up in lawsuits). This is why seeing independent specialists and doctors in private practice costs patients more.

This hits low-cost clinics – like Planned Parenthood – particularly hard. Many clinics (primarily used by low-income individuals, teens, those without insurance, and minorities) are already struggling to keep their doors open and retain physicians to provide services with little or no pay, and offer quality care to patients.

Note: current law specifies unlimited awards for a patient’s medical costs, punitive damages against the practitioners, and lost wages/earning potential associated with a medical liability case. The current cap of $250,000 only applies to pain and suffering awards.

2. It requires both random and routine drug and alcohol testing of physicians who are involved in any medical procedure that has an associated “adverse event.”

I’m not against drug testing of medical practitioners – patient safety is absolutely paramount and I certainly don’t want someone under the influence in charge of my health! However, more drug testing equals higher costs – the bill as written requires hospitals to bill physicians for these costs. The costs are there whether the practitioners are testing positive or negative for substances, and again increases the cost to physicians of practicing medicine in California.

Aside from the cost factor, the bill would require that practitioners who are involved in a case that resulted in an adverse event (even if that event turned out to be accidental and not related to physician negligence) be suspended from practicing medicine until positive results are investigated [see Section 2350.30(b)].

So, for example: a patient claims to have suffered extra injury from a surgery but it’s not reported until after the procedure (days or weeks or even years after – a statute of limitations on the discovery of adverse events does not appear to be written into the bill). The medical professionals involved in the surgery are sent for drug testing – after the fact (because time travel hasn’t been invented yet). Perhaps they test positive for Vicodin (an opioid) in their system due to a dental procedure they had that day (the day the drug testing is required, which is who knows how long AFTER the surgery on the patient) and said Vicodin wasn’t prescribed by a third party or it was leftover from a prior procedure. (Or maybe the physician smoked marijuana to relax after a particularly intense day of surgeries and they don’t have a prescription!) Their license is suspended until the courts investigate the practitioner and obtain proof that they were not under the influence during the surgery.

How in the world is anyone to know if the physician was under the influence while practicing medicine if the drug testing occurs after the fact? No one can know that, so the (possibly unintended) result of requiring drug testing is that medical practitioners involved in adverse events are presumed to have been under the influence and punished for being under the influence (due to the temporary license suspension) even if it’s impossible to prove that drugs were not involved in the event.

[Note: Prop 46 defines “drugs” as marijuana, cocaine, amphetamines, opiates, and phencyclidine (PCP).]

3. It requires practitioners and prescription drug providers to consult a government-run database prior to prescribing controlled substances to patients.

This portion of the bill is intended to thwart drug-seekers who abuse medications such as prescription painkillers by visiting multiple doctors in order to obtain multiple prescriptions. Any time a medication from a list of controlled substances is prescribed by a physician or the prescription is filled at a pharmacy, the medical professional must first check the CURES database to see if that medication or something similar has been given to that patient before and how often and by whom.

Patient privacy comes into play here because any physician or pharmacist who logs into the database can see your medical history – not just your primary care doctor. Also, law enforcement has access to the database, regardless of the fact that they do not have pharmaceutical training.

In addition, the database is a government-owned and run program. The technology is not up-to-date; it’s slow and unreliable and cannot currently withstand the additional load to servers that would occur if every physician and pharmacist in the state was required to log in every time a prescription was being written or filled. (In September of 2013, Senate Bill 809 was introduced and passed into law, which required upgrades to the CURES database; however, that process was expected to take two years. If Prop 46 passes this fall, it goes into effect immediately – about a year before the upgrades to the database are due to be completed.)

When a physician or pharmacist cannot log into CURES due to a slow server or a crashing system, patients (including those who are NOT drug seekers) will be denied prescription pain relievers. Once again, this issue would hit rural areas the hardest because technology is notoriously behind the times. Even if rural hospitals and clinics have up-to-date physical hardware, internet speeds are rarely optimal.

 ***

One last thing that I feel is important to point out as a strong indicator that Californians should vote no on Prop 46 is the list of supporters (1 senator and 3 organizations) vs. opponents (I’m not actually going to count that gigantic list but it includes officials, doctors and medical groups, medical societies and business groups, labor unions, hospitals and health centers, insurance companies, and other groups such as the ACLU and the Civil Justice Association of California).

* My work in a rural northern California hospital included legal contract tracking and processing and physician recruitment support. I worked with the Business Development, Finance, Risk Management, and Legal departments during my tenure. The hospital’s patient population overwhelmingly consisted of low income people with Medicare coverage and due to the rising costs of healthcare combined with low reimbursement rates from insurance companies, the hospital struggled to stay in operation. Further, it was extremely difficult to recruit quality, experienced physicians to the area due to low compensation compared to the high cost of practicing medicine.

Mental Illness, Mass Violence, And A Brick Wall

I’ve written about my brother Daniel previously here and here. Both of those posts are very much worth reading to understand our family’s story.

Here in the US it seems we are dealing with mass shootings on a regular basis now. It may or may not be due to an increase in the actual number of shootings, but for whatever reason we are becoming more aware of and focused on the problem. Some people blame misogyny, others blame gun laws, and still others place the blame on the media for sensationalizing the gunmen. Many (if not most) of us are at a complete loss as to what to do to address – and hopefully prevent – more violence.

By Francois Polito (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

By Francois Polito (Own work) CC-BY-SA-3.0, via Wikimedia Commons

I don’t have a solution to the problem, unfortunately. I wish I did! But I hear people asking why these things happen and I do have some insight to offer in that regard – on the individuals who are violent, mentally ill, and left completely unchecked due to enormous flaws in our legal and mental health systems.

First, let me make a few things clear:

The diagnosis of a mental illness should not be a grounds for denying a person rights by itself.

The vast majority of us living with mental illness are not violent and present no danger to those around us.

The fact that a person suffers from a mental illness does not mean that he/she cannot make good decisions.

With that said, there are those out there that are both violent and mentally ill – and they are not receiving sufficient treatment. Further, there is no recourse for those around them – there is only brick wall after brick wall standing in the way of getting their loved ones help. Family and friends have to sit and watch while the illness continues to eat away at everything that was good about the person.

After each shooting, we are lambasted with details about the shooters and their families. In most of these cases, so many aspects are eerily familiar to me. The recent shooting near Santa Barbara by Elliot Rodger, which was mostly blamed on misogyny, struck a huge chord with me – the big similarity being that my brother has made many of the same statements as Rodger regarding women. Like the shooter, my brother believes that those around him are to blame for his lot in life. If he were to go on a murderous rampage that was aimed at women, a person might say that his misogyny was at the heart of it and they wouldn’t be completely off-base.

But, here is the thing – over the years as Daniel’s illness has gotten progressively worse, he has also made horrible, violent statements about actors, people of color, doctors – even babies. There is no guessing who his derision will be aimed at next. Any violent acts he commits could happen to occur while he is focused on any of these groups of people. This is how his mental illness works.

Remember: not all mental illness works that way and most who suffer from mental illness (or even the specific illness my brother suffers from) are NOT violent. Individuals are different and that means that the ways in which mental illness manifests in each person will be different, even if they have the same diagnosis.

My brother has been diagnosed with Schizoaffective Disorder and, in his case, he exhibits violent tendencies when he is at a low point (despite the fact that aggression is not listed as a symptom for the disorder – for him, it IS a symptom that his illness is flaring big time). His understanding of his life story differs from the generally accepted reality. His understanding of events and people differs from reality. His understanding of language and the meaning of words differs from what is agreed-upon by society. He lives in an alternate reality, one that is not truly representative of what is actually going on around him.

His behavior is not the result of societal attitudes – his behavior is due to the way his brain processes information. Because of this, he latches onto things that he hears and sees around him that fit into his own twisted view of the world – many of those things happen to deal with racism, sexism, conspiracies, etc. – anything having to do with extreme displays of emotion or radical ideas. If something doesn’t fit into his ideas about the world, he will either dismiss it completely or reframe it to fit into his own way of thinking.

Unlike my brother, most of these shooters haven’t been diagnosed with a mental illness, but that doesn’t mean they don’t suffer from mental illness, does it? In the case of Elliot Rodger, he had seen several therapists and his parents had called the police because they were concerned about his behavior. Having no prior knowledge of the weapons he had stored in his home or his many internet rants (which could have provided important information about his mental state), the police walked away when Rodger assured them that he wasn’t going to do anything violent.

We ask why we didn’t this coming, but even if we did – what could be done about it?

I can’t tell you how many specialists my brother has seen over the years who never diagnosed him with Schizoaffective Disorder. (He has diagnosed with ADD at one point as a child, which was clearly a drop-in-the-bucket of what was really going on.) Many of us who suffer with mental illness can tell you that RARELY does anyone hand over a piece of paper with a diagnosis on it, even if they are more than willing to write a prescription to treat symptoms – and it’s extremely common to be mis- or under-diagnosed. Each type of mental illness can manifest in so many different ways and symptoms can change drastically over time. In my brother’s case, the longer he goes untreated, the more his disease seems to progress and take him further from reality.

The presence of mental illness is one piece of the puzzle, but we have to ask whether there are adequate systems in place to address violent mental illness and prevent that violence from being directed outwardly and at the public.

Due to my family’s experience (and the stories of others who have shared their own struggles to get help for ill family members) I can say with 100% confidence that NO, our system is absolutely NOT set up to handle these issues in any sort of helpful manner. And there is very little that is being done about that fact, despite the growing concern over occurrences of public acts of mass violence.

My brother has talked again and again about inflicting violence on others – family, strangers, whatever. He has described in detail what he would do in an attempt to get away with it, stating that he would leave various body parts of his victims in random, separate trash cans. He has spoken positively of concentration camps. He is paranoid, delusional, and has hallucinations. He has made threats directly toward people, destroyed property, and, most recently, he has physically assaulted members of my family. He has published his rants all over the internet – just as Elliot Rodger did, and countless other perpetrators before him – and our family’s attempts to get help for him, to prevent his aggression from escalating violently and publicly, have gone nowhere.

The police have been called many times over the last 6 years or so, but only the most recent incident led to any criminal action – when he punched my mother in the eye, he was finally arrested. My mother moved to an undisclosed location and got an order of protection against her only son, as much as that killed her to do it. My brother was quickly released from jail and assigned a court date. In lieu of more jail time and felony charges, the court ordered him to participate in a “mental health program,” a program that doesn’t require that he take medication, be supervised by anyone, or be admitted for in-patient care. He simply has to attend counseling.

So, to recap, we are talking about an adult male with a diagnosed mental illness that he refuses to treat (or even acknowledge), numerous violent outbursts that have required police intervention, jail time, and restraining orders, plus detailed plans for other acts of violence against the public. Is counseling going to cut it?

My brother can easily obtain a gun or guns LEGALLY. After all, he has no felonies on his record and has never been held as an in-patient at a mental facility (my mother tried to have him admitted – they wouldn’t take him because they didn’t have enough beds, he didn’t appear out of control, and he is over 18 and didn’t want to be admitted) – which in California is grounds for denying the purchase of a gun. Apparently his therapist has insufficient evidence to show he is a threat toward anyone – his sense of self-preservation is still strong and he tends to not mention his violent thoughts to those with authority. My mother has done everything she could think of to give the therapist, the police, and the court the information they need to address my brother’s problems, but there is only so much she can do while also keeping herself safe from him.

My family members and I can tell you that my brother wouldn’t think twice about going on a shooting spree. He doesn’t really understand the emotions of others, and in fact seems to enjoy seeing emotions played out in extreme ways. It clearly doesn’t matter what his family members say, though – we’ve exhausted the system.

At this point it seems that his case is a lost cause and he is a ticking time bomb. And when it goes off, the police and even his therapists will probably say there was no warning or that the evidence was insufficient to do anything to prevent his acts of violence.

But clearly there is evidence…there is just no solution to this glaring problem.

Aural Update

Is that a word – aural? I’m not sure but it is amusing to me so I’m going with it.

In case you haven’t guessed (or you’re new here), this is in reference to my post Lions and Tigers and Auras, Oh My! I thought an update might be in order.

First, Jack spent a weekend with his dad and step-mom and during his time there, his step-mom asked him how long he’s been seeing colors around people. Jack’s answer was, “Since I got my new glasses.” And we all thought, AH HA!

I did some research and found out this is called chromatic aberration, or “color ghosting” around the edges of objects. It is much more common in polycarbonate lenses (which are generally what they give to children because they are more durable) that have stronger prescriptions. Some people don’t notice it, but Jack does. Apparently.

In addition to learning this valuable information, I met with Jack’s therapist and her supervisor – both to get my questions answered and get an update on Jack’s progress in therapy. We all agreed that Jack is an extra-empathetic and intuitive kid. We also agreed that he is in need of tools to help him learn how to distance himself from the emotions of those around him so that he doesn’t absorb them, which has caused him problems at school. He comes by this naturally – I deal with it, as well. This ‘ability’ has led me to refer to myself as a ‘mood sponge’ and it can be very difficult for me to differentiate between my own feelings and those of various highly emotional people I might spend time with and care about. It can be very confusing when I get depressed out of nowhere and have no clue as to why – and then it all becomes clear when a family member or friend that I’ve been around a lot admits they’ve been struggling with depression. Anyway, I haven’t done a great job of learning how to handle this, so it’s not something I can help Jack with. Jack’s therapist, however, can help him with that as part of their regular therapy.

Regarding the whole auras and Intuitive thing – the supervising therapist clarified that she had not been suggesting that Jack meet with an Intuitive – merely, it was a resource for me (and his other parents) if we wanted some additional guidance in understanding a highly empathetic child. None of that is part of the therapy he is getting from them; it’s just extra information that we can do with what we will. I expressed our general discomfort with that route and let both therapists know that we’d like to focus on the typical therapeutic methods of helping Jack to learn to put up boundaries, which they are more than happy to do. Whew.

I didn’t bother arguing that I don’t think Jack can actually see auras or explaining about the chromatic aberration thing. Essentially, the whys of his empathetic nature aren’t so important to me – I don’t think we can really know why he is the way he is. What is really important is that he learns how to utilize his empathy to his own benefit instead of being constantly exhausted by the emotions of others around him.

Hopefully I can learn that, too! It would sure make my life easier.

Last but not least, THANK YOU to everyone who provided input on my post. It was very helpful to hear a variety of perspectives on this subject. I really appreciate it. My friend Jana recommended I get the book The Highly Intuitive Child: A Guide to Understanding and Parenting Unusually Sensitive and Empathic Children (that’s an affiliate link). I’ve started reading through it and so far it’s RIGHT ON. So if you’ve noticed your own child seems extra sensitive to the world around him/her and you’re looking for some parenting tips, go check it out!