What I Did on My Summer Vacation – Part 1

By John Conway | September 5, 2009 11:00 am

For most academics, summer is the time to devote full time to research and, perhaps, a vacation. Not for me, this year…I have been in the front lines of health care, and so the national focus on the health care insurance reform issue has been particularly poignant. Here is my report.

The health problem at the core is not my own, it’s my father’s. For some time, more than a year, he had had increasing trouble walking. I was convinced it was degeneration of his knees; at 77, after a physically demanding career as a locomotive mechanic in Chicago, that seemed to be the best explanation for his increasing difficulty.

In February we visited him in his house in Chicago and, unlike the previous visit in January, he came out to eat lunch. We had tremendous difficulty getting him down the stairs, to the car, into the restaurant, and back into his house. He took one stair at a time, very slowly, and we carried him up the last one. Clearly it would not be much more time until something had to happen. He had spent most of the winter inside; kind neighbors helped by buying him food at the store.

About a week later I got a call from him, on the cordless phone I had installed for him in the fall. He was on his way to the hospital, having fallen in the house. He had been unable to get up for hours, and finally the paramedics got the front door open and got him out of there. Being nearly 2000 miles away in California, with no family there in Chicago to help him, I was quite worried. He checked into the ER of a hospital near his house, and was admitted.

Over the next few weeks my dad received a full suite of tests to determine the underlying cause of his inability to walk, and got some physical therapy. The eventual diagnosis was scary: ALS, amyotrophic lateral sclerosis, or Lou Gehrig’s disease. ALS is the degeneartion of the voluntary motor neuron system. Any muscle that you can voluntarily control is affected. There is no known cause for ALS, and no known cure. The time from diagnosis to death, which is usually due to inability to breathe, is typically 3-5 years. There is no test for ALS; all you can do is rule out other conditions and it wasn’t joint degeneration, spinal cord damage, a toxin, brain tumor, or any of the numerous other things they checked. He was discharged to a skilled nursing facility for rehabilitation and physical therapy.

After several weeks, he decided to try to return home and live there, getting help from the neighbors. But it was short-lived; he fell again and decided to go back to the hospital. This time I urged him to go to a large university teaching hospital, which he did.

There they did a full suite of tests and concluded that indeed he most likely had ALS. He was discharged to a rehab institution and then back to the nursing home where he had been before attempting to return home. Through all of this he remained positive and upbeat, determined to defeat the ALS, and get back on his feet. His physical therapy, though, did not progress, and the nursing home threatened to discharge him.

But then, while in the nursing home, now mid June, he began to feel very ill, had flu-like symptoms, could not hold his head up or his eyes open, had trouble swallowing and talking, and controlling his hands. Terrified that the ALS was progressing rapidly, we got him back to the university hospital. There they tried to determine whether he had “bulbar ALS” (meaning that ALS was affecting the muscles controlled by the medulla: head/neck/throat/mouth) or something else. I flew out to Chicago, and found a totally changed man, head hanging and eyes drooping, laboring to breathe. It was very, very scary.

It was something else, in fact: myasthenia gravis (MG). This autoimmune disease attacks the motor neuron/muscle interface in the bulbar region. There is a test for it: a very specific antibody in the bloodstream causes it. There is no real cure, but there is a drug therapy, intravenous immunoglobulin (IVIG) which somehow neutralizes the MG antibody. IVIG is tremendously expensive, as the drug is carefully extracted from thousands of donated human blood samples. Meanwhile, the production of the antibody can be suppressed with a less expensive drug called azathioprine, though this drug takes months to work.

My dad got IVIG therapy and was discharged to a different SNF since he did not particularly like the previous one. He rapidly improved, continued to receive IVIG every few weeks, and then we faced a problem: Medicare was about to run out.

Most of you readers not being over 65, you probably don’t really know how Medicare works. I didn’t, really, until all this happened. There are two parts: Medicare Part A and Part B. Part A covers hospitalization and other “inpatient” services, while Medicare part B covers outpatient services like doctors’ fees, prosthetics, etc. If you have been employed in the US for 10 years or more there is no premium for Medicare Part A, Part B costs $96.40 per month, with a relatively small annual deductible. (There are also Parts C and D but we won’t delve into that here.)

When I say “covers” I need to be clear. Medicare Part A has some hefty deductibles and daily hospital charges that could easily wipe someone out financially. And Medicare Part B typically covers 80% of doctors fees incurred during a hospital stay. And so, those who can afford to do so purchase supplemental Medicare insurance which covers the gaps in Part A and B. Fortunately, I had urged my dad some time ago to do this, and he did. Supplemental insurance costs about $200/month.

In the end his hospital bills were enormous, the equivalent of years of his retirement income, but completely paid by Medicare + supplemental except for a small deductible. The quality of the care he received was superb, particularly at the university hospital. His neurologist is one of the smartest, kindest, and dedicated physicians I have ever encountered, and in the face of this terrible illness showed true human compassion.

People who receive Medicare are generally very happy with it. Indeed, as we have seen this past August, a great deal of the outrage expressed at congressional town hall meetings has been to protest any possible changes or reduction of Medicare benefits. This has sent the Republicans into a logical tizzy, expressing their undying support for Medicare while at the same time railing against any sort of government run health care plan at all. Yet it is true Medicare is facing insolvency in the longer term if health care costs keep rising faster than inflation, and eating a larger and larger portion of the economy. Part of the challenge of health care reform is certainly stabilizing Medicare for the long term. With far lower administrative costs than private insurance, and no profit motive, a move away from fee-for-service and a cap on medical liability costs may be the answer.

I said that Medicare had “run out” for my dad in August. The reason is that Medicare is not long-term care insurance. After a hospitalization, Medicare plus supplemental insurance covers up to 100 days in a rehab or skilled nursing facility. After that you are on your own. If you have any money, you start paying for the level of care you need, and if you eventually run out of money, you go on public aid: Medicaid.

This is the classic scenario that people keep raising in the health care debate: should it be that if you have Medicare and supplemental insurance, then if you happen to get a disease that necessitates long term care, your life savings and (once you pass away) your home are taken from your estate? Should catastrophic illness be the huge cause of bankruptcy that it is?

Well, you can argue, there is long term care insurance. Anyone who is about 55 or over should think seriously about enrolling in LTCI. It costs $2500-4000 per year depending on your age. A skilled nursing facility costs $6000-7000 per month! My dad did not get LTCI; this would have raised his total insurance bill to about 30% of his total retirement income! It would have been the right move, though. I didn’t know about this Medicare 100-day limitation or I would have urged him to do this years ago. I assume all this was discussed in the AARP newsletters, etc. that he got as a senior for years.

And now, of course, he has a pre-existing condition, and is ineligible for long-term care insurance. He cannot return home and fend for himself – it’s simply unsafe. And assuming his ALS progresses, he will eventually lose his present ability to wheel himself around in the wheelchair, get in and out of bed, on/off the toilet, etc. because his arms will lose their strength. When this happens he’ll need full time skilled nursing.

When I tell this story to my European and Asian colleagues, they are appalled that this is how we treat senior citizens who are ill. They’ve grown up in a society where it is simply assumed that if you get seriously ill, or expect you might, you don’t need to wade through a mass of rules and regulations, limitations and deductibles and copayments to get the care you need.

Bankruptcy and state aid may be the inevitable final destination for my father, who is now in an assisted-living home very close to where I live in California. But we have one more hope, and that is due to the fact that my father served in the Air Force in the early 1950’s, during the Korean War. He was in Strategic Air Command, and helped keep our B-47s operational in Saudia Arabia and elsewhere. Last year, the VA made ALS a “presumptive service-related condition” because veterans get the disease at twice the rate of the general population. Here again, no one knows why, but it points to an environmental factor, obviously.

Having a service-related disability that requires aid and attendance triggers some pretty solid benefits from the VA, for which my dad has applied. We’ll know in the near future. I have found the VA people on the phone, in person in Chicago, and at our local county-funded veterans office to be incredibly helpful and very efficient. The VA is pretty far behind processing claims these days, but we are hopeful.

It’s hard to predict the future, and so I am focused on giving my dad some real quality of life in the time he has to enjoy it. He has taken quite a shine to his 14-month-old grandson, and seems to enjoy his new surroundings in California. He won’t have snow and ice to contend with all winter, and we’ll get him out and about when we can, including to one of the top neurologists in the world, yes, covered by Medicare. We need to start to get to the bottom of the question as to how he could have contracted two different neuromuscular diseases.

And yes, my dad has had some preliminary end-of-life counseling. ALS is a particularly gruesome way to die, and as there is no known cure, the questions about how to manage one’s care in the terminal stages are very important to address. I have found the crass politicization of end-of-life counseling by the anti-health-care-reform wingnuts to be disgusting in the extreme. Of course patients need to hear from their doctors what to expect, and of course patients need to discuss with their loved ones what they do and don’t want done if they are terminal, and of course this all should be an expense covered by health insurance! That this issue has been used to derail rational discussion on reforming health care is pure evil.

It was surprising to me that the wingnuts had not latched onto the hospice care provision in Medicare. But then, sure enough, just last night, listening to the right-wing talk radio show “The Hugh Hewitt Show” (I sometimes tune into these shows just to see how low they can stoop) there were blatant, unabashed lies being told about it, claiming that “if you don’t die within a certain time then Medicare says “too bad”. [Not so: Medicare covers an initial nine months of hospice care for terminal patients. Then, if you haven’t died yet, and you can get a doctor to certify that you are indeed terminal, you get another six months, etc.] And people listen to these lies and just believe them.

We need a return, as a nation, to an informed and rational debate about the choices facing us in reforming health care. We have a chance to do this right, but it’s obviously a very complex and emotional subject. I do hope Obama’s address to Congress on Wednesday will remind us that we are, after all, in this together as a nation, and to remain respectful and compassionate for each other.

Anyway dear readers, now you know why I have not been blogging lately…more to come about my summer in future posts.

  • http://blogs.discovermagazine.com/cosmicvariance/sean/ Sean

    Excellent writeup, thanks. I haven’t been following the health-care-reform debate as closely as I could have. It’s helpful to sketch out the general outlines and also bring it down to Earth with a specific example.

    Hope your father’s treatment continues to go well.

  • http://tyleraugust.blogspot.com Tyler August

    Thank you for sharing your story.
    Those of us in more socialist countries can only imagine the pain and suffering Americans go through at end-of-life– watching a loved one pass on has to be about the most harrowing experience I can imagine. To add to that endless fights with insurance companies is simply cruel.

    The health care debate is in part what decided my partner and I against applying to graduate schools in the United States of America. We simply do not want to live in a country that does such things, for all that we respect and value our American friends and colleagues.

    Best of luck to you and your family, John. Our thoughts are with you.

  • tacitus

    I have lived in the US for 16 years now, having emigrated from the UK, and I have had plenty of experience with both health care systems. If you have money, and you have your health, there is little doubt that America is a great place to live, but should you lose one or the other then you are at great risk of losing both, and can make life incredible hard on both you and your loved ones.

    As I read the second paragraph above, I knew immediately where this was leading. About ten years ago I began having symptoms of muscle weakness and fasciculations (musle twitching) and pretty quickly self-diagnosed ALS. As it turned out, I was wrong (self-diagnosis does that!) but it wasn’t until after months of consultations and tests that I was convinced I was wrong. Fortunately I worked for IBM, which provides excellent health insurance, and they paid for all the tests (less the deductibles) as I chased my phantom illness.

    But I am now self-employed (by choice), I have to find my own insurance. No problem, I thought. I’m in good health and in my mid 40s. Sure enough, there was a good UHC plan for $180/month, even with $3,000/yr prescription coverage.

    18 months later, the same plan is now $262/month, a 50% rise after just a handful of visits to the doctor for things like treating a bout of insomnia and removing wax from an ear. I had a mole removed from my back. I am very fair skinned so at risk from skin cancer. The doctor checked off two tests and sent it to the lab. They called a couple of days later to say I was fine, but I only found out 4 weeks later when the bill came through, that my insurance company had rejected cover on one of the tests (at a cost of only $100) and it hadn’t been done. That’s despite the fact that all $100 would have come out of my deductible (of which I had used, perhaps, only 3% at the time.

    None of this compares to what John’s dad has gone through, not even close, but it just shows what Americans who are not in good company health plans have to go through, even with the small stuff that should a no brainer. I have friends who have been laid off and can no longer afford health insurance, and I have a another friend my age who, because of chronic asthma, can no longer afford the premiums for her plan since they were adjusted upwards by 100% in one year even though she wasn’t a drain on their resources. Another friend of mine had to quit a good job and find another one because the health benefits were so lousy.

    Contrast my brother’s family, who still lives in the UK. When my brother quit his full time job to go self-employed, he didn’t have to spend a single moment worrying about health care (as opposed to the many hours I had to put in just researching my options). His wife runs a business from home that employs two dozen part timers (mostly stay-at-home mothers), and she doesn’t have to worry about providing health insurance to her workforce, and knows that should any of them get sick, they will get the treatment they need from the NHS and be back at work as soon as possible. Of course, my brother and his wife never have to worry about getting treatment for their kids when they get sick.

    For all its flaws (and there are many) the presence of the British National Health Service means that the (temporary) unemployed, the self-employed, and the small business owners simply do not have to worry, for one second, about medical bills and battling an insurance company for coverage… ever. Until you have experienced it for yourself, it’s difficult to understand how much of a difference that makes, particularly if you are already struggling to fight a serious illness.

    From what I have seen, the US health care system is becoming a serious impediment to American entrepreneurship, with the self-employed and small business owners having to take greater and greater risks with their health and well being when going it alone. I wish more conservatives would take off their ideological blinkers and see what’s really happening before it becomes worse than it already is. Even the very conservative-minded Switzerland saw the need for national health cover back in the 90s and the right-wing opponents of the plan now fully support it. Likewise there is not one conservative party in the EC that would abolish their national health system. Only in America…

    And finally let me add my best wishes to your father, John, and all who have been impacted by his illness, including yourself.

  • JoAnne

    John – I am very sorry to hear about your father. I hope he finds comfort and peace.

    Our healthcare system is a nightmare, as everyone who has to deal with it finds out. Your story is a poignant illustration – thanks for telling it.

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  • http://www.thetechnobabe.com/ Technobabe

    My husband is on Social Security Disability and I receive social security. He gets medicare and I am not old enough yet. For many years I have had no insurance. There are so many people like us in this country. We wouldn’t have money to pay for insurance even if insurance were offered at a monthly cost of $100 or less. Just couldn’t do it. So we do the best we can and are very interested in the ongoing discussions on health care reform. Your post is superb. Very well written and informative. Our best to your father.

  • chemicalscum

    I am thankful I live in Canada and grew up in the UK. John, My best wishes for your father and I hope that the American people get a reasonable health care system in the not too distant future.

  • Andrew

    Thanks for the write up. All the very best to you and your dad.

  • http://blogs.discovermagazine.com/cosmicvariance/mark/ Mark

    Thanks for writing so clearly about such a personal and difficult time John. Best wishes to your father and to you.

  • http://pleion.blogspot.com Bjørn Østman

    Eye-opening story. Thanks.

    Of course patients need to hear from their doctors what to expect, and of course patients need to discuss with their loved ones what they do and don’t want done if they are terminal, and of course this all should be an expense covered by health insurance!

    Information from the doctor: paid by insurance.
    Discussion with loved ones: no bill, I gather.

    So, is anyone really saying that once the doctor has diagnosed the patient, to hear what to then expect should be paid out of pocket? That sounds too preposterous to be true.

  • http://evolvingthoughts.net John Wilkins

    I am aghast that your dad would find himself thus treated. In a civilised country, how can this be tolerated? Here in Australia, he would at least get medical and hospice care.

  • Dave J

    When I tell this story to my European and Asian colleagues, they are appalled that this is how we treat senior citizens who are ill.

    Unsurprisingly. I’ve spent rather a lot of time between the UK (where I live) and the US over the past eight months and watching the ongoing health care debate in the US has been stomach turning. How an otherwise broadly civilised country can believe it’s acceptable to watch people fall into bankruptcy at the end of their lives is genuinely appalling. Indeed, each time I return to the UK I thank my lucky stars that we’ve got the NHS.

    Best wishes to you and your father; a good friend has suffered with ALS for a long time and I know how unpleasant a disease it is. Chin up.

  • Julianne

    One clarification about long term care insurance. If you can afford it, it’s worth thinking about getting it when you’re much younger than 55. If you do, you lock in a much cheaper rate (since, from the insurance company’s point of view, you’ll be paying in for longer). You’re also protected for longer, since there are many ways you can wind up needing long term care before you turn 55 (for example, a friend of the family came down with ALS in her early 50’s). Finally, if you wait too long, you may not find anyone willing to cover you.

    In my family, the women tend to live forever, but outlive their brains by a good 10-15 years. So, long term care insurance has been a high priority.

  • Fermi Walker Public Transport


    Sorry to read about what has happened to your dad and I wish the best for you both. I have been following the health reform debate as this affects me as a long-term expat. About ten years ago I came down with macular degeneration in one eye and lost partial sight. This of course is not nearly as bad as what has happened to John’s dad, but it is still significant. I would have more career
    opportunities as a scientist if I returned to the states, but I have also been told that this and my neurological issues would mean that I would have a tough time getting affordable medical insurance so I am in a bit of a quandary. Of course I would also be able to see my family more often.

  • matty

    Doing a quick study of pie charts and american history i think it’s very easy to discern where these problems stem from. different countries have different priorities and while the us does indeed have a huge budget for health care already, the priority of the budget does not really rest there. over 44% of the US budget goes towards defense and war making. in the uk as far as i can tell the figure is around 5%. since the beginning of the cold war the main focus of the government of the united states has been to remain the world military super power. arguably the most domestically motivated president of this period was Lyndon Johnson and the only way for him to get support for his domestic agenda which included social security and medicare was to support the war on Vietnam and appease commie hunting war hawks. eventually both sides of the debate turned on Johnson but while his “great society” fell by the wayside the millitary spending continued.

    it is my opinion that in the last 60 years the motivation behind militarization of our economy (personal greed, power, profit, undereducation) has invaded almost every sect of the American economy including health care. just look at what drug companies like Pfizer do to sell products and make profits. changing that motivation on the big scale from profit motivated to person motivated is not only hard to do structurally, which they focus on in the senate these days, but also requires a massive change in the way the entire American society has progressed. Obama talked about these grander ideas on the presidential trail, but now that he is embroiled in Washington politics much of the momentum has been lost.

  • Dylan

    From this http://en.wikipedia.org/wiki/Government_spending#United_States_of_ I got around 13% Perhaps you got mixed up at just looking at Federal spending or discretionary spending?

    I don’t think that line of thinking is justified at all. I wish more people when arguing some nefarious motive would seriously explore a counterfactual world where the motive doesn’t exist to see if that world is all that different from this one. I don’t think it is surprising that making major changes to something so important is going to cause anxiety with people. Also I would expect that pundits and politicians are going to produce misleading and false arguments considering this and that most people don’t understand the more complicated parts of our health care system.

  • David

    Terrifying and infuriating.
    Best of luck John.

  • Vincent Archer

    From an european perspective, the Healthcare debate in the US is completely incomprehensible.

    I’m going to skip some anecdotal evidence from people I know that worked in the US who essentially qualified the way it worked as “pretty good by third world standards”.

    The US faces two problems:

    1) Lack of coverage (or adequate coverage) for an extremely large segment of their population
    2) Inflating costs of healthcare insurance

    Both problems require different solutions. The 1st is easier to tackle, the 2nd is far more intractable. I suspect Obama will end up tackling problem 1 more or less on its own, then do some ad-hoc and inefficient compromises on the second.

    The first is easy. About every country that models the way american seem to want their healthcare to work (namely: private insurance, private medicine) has it working well due to two factors:

    a) Every single healthcare company is not allowed to refuse coverage. No matter what preexisting condition, previous insurance history, whatever. If you can pay for the coverage, you’re in. To allow insurance to work (otherwise, people are tempted to skim on coverage if they’re healthy), coverage is mandatory.
    b) In almost every country, the healthcare insurance sector is not allowed to make a profit (and that’s a thoughie for the american mindset to swallow). The executives are allowed to get big salaries, and big bonuses for performance, sure, but there are no shareholders pressuring the company to make a profit over people’s health. No direct incentives to deny coverage, deny treatment, deny testing or whatever to people who need it (in fact, in most countries, the doctor decides what treatment or tests are necessary for a patient’s health, and the insurance pays. They can only refuse to pay if you go over the stated coverage limits, or if they can prove fraud).

    Of course, the insurance sector biggies are going to fight tooth and nail against those propositions. Their profits are at stake, and it’s a well known fact that corporations are motivated entirely by greed (in fact, there’s a legal obligation for them to do so).

  • http://arunsmusings.blogspot.com Arun

    John, best wishes for your father and you!


    Regarding Vincent Archer’s points about the rising costs of healthcare in the US, I think the Atul Gawande article in the New Yorker is worth reading:


  • http://www.homebusinesssteps.com Evelyn Guzman

    It is good to know all these things for the simple reason that when we run a business with part time employees, then we may have to cover them with health insurance. What I know usually is that business do not have to cover the health insurance for part time workers, but who knows for sure?

    Evelyn Guzman
    http://www.homebusinesssteps.com (If you want to visit, just click but if it doesn’t work, copy and paste it onto your browser.)

  • DeiRenDopa

    What do wingnuts in the US do when they are diagnosed with ALS? Or denied coverage due to a pre-existing condition?

    The wingnuts who are not billionaires, that is (or covered by government health care plans, such as those in Congress seem to have) …

  • jimvj

    Recommend T.R. Reid’s book “The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care”. Reid was interviewed yesterday on CSPAN’s Q&A: http://www.c-spanarchives.org/library/index.php?main_page=product_video_info&cPath=6_32&products_id=288559-1

    His main point is that we have to first settle the moral question: Do we as a nation want everyone to have equal access to health care? If the answer is yes – as it is for all other developed countries – there are many implementations that will get us there.

    The US has never faced and answered this question unambiguously, which is why we have a hodge-podge system.

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  • claire cordts

    I am a parent of 4 children. When they reached college age we had to choose between college, and health insurance . We paid $900.00 EACH a month. The children were covered in school,so we gambled and went without health coverage for 10 yrs. This year we lost our small business. We were not eligible for unemployment ,although we have paid for it for 38yrs. We made the choice to invest in our children. Is this the American dream????????

  • Donna

    Thank you for writing a sane commentary on the state of the health care situation in the U.S.

    I was originally diagnosed with myasthenia gravis as a child. Although I would like to take long term care insurance, I am uninsurable because of my pre-existing condition.

    I’d like all the talking robots to walk in the shoes of others with pre-existing conditions and see how long it would be before they cried ‘uncle’ as they lose their health, savings, and homes.

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  • http://rainbow-science.blogspot.com/ Rainbow Scientist

    its scary!!!!

  • Vincent Archer

    “What do wingnuts in the US do when they are diagnosed with ALS? Or denied coverage due to a pre-existing condition? ”

    The same as wingnuts in any country that has a government-backed health plan. They suddendly discover the wonders of having that universal coverage. I remember one of the foremost radio-host proponent of the “let’s dismantle government healthcare, the private sector will do a better job” developping a rather severe and complex heart condition. After a year of various tests, treatments, he did realise that no private health plan would have provided, and he would probably have been dead by then.

    The healthy always grumble about the costs of health insurance. Like any insurance. It’s only after you’ve really needed it that you fully realize its benefits.

  • DeiRenDopa

    @Vincent Archer: thanks, that’s about what I expected.

    I guess it does no good whatsoever to collect these sorts of stories and play them back at the, as of today, still healthy wingnuts? I mean, since consistency is not their strong suit to begin with …

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  • Just

    I have ALS. When I can’t work, I will lose my insurance. Then what?

    The way we live is disgusting and cruel. I will be left to die alone.

    Thanks, brainwashed America. You voted for this insane system.

  • Cristina


    I am really sorry to hear about your father. My mother had ALS as well, diagnosed when she was 51. I was her main care giver (it happened while I was a student, and there were no nursing facilities in my country then), so I know how nasty it can be. She slowly lost her control over most muscles, but was in a stable situation, being still able to talk, move her head and swallow for about 3 years, then she was suddenly unable to breathe well. She died at 56, after 2 days in the hospital, before they figured out she needed to be on respirators (I think more of her systems had simultaneously collapsed then…) But I heard of people living with this for 10 years or more, so it’s not necessarily a death sentence. I hope your father will fare well, get all the care he needs from the VA and enjoy his grandson (and the other way around) for many more years to come!

    I also hope the US will start having a decent health care system soon. When at Fermilab we had to pay 1450 dollars to cover my husband, me and our 2 year old son at a reasonable level (in Europe, the same care we get for about 400 EUR per month…) It’s one of the main reasons we decided to never apply for jobs in the US…

    Best wishes,

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