Random Thoughts on a Holiday Weekend

Yesterday I spent well over an hour online trying to initiate a Medicaid application for my elderly aunt. I had no success. I learned one thing. After completing the first part of what I thought was the correct process, I found out it was not. Buried four clicks in, and after filling out two preliminary forms, and after receiving several error messages and a rejection notice, they finally explained how to initiate an application for someone over 65. After all that, I learned that you are supposed to call the helpline or visit a Medicaid office! It seems that little tidbit could have appeared on the very first screen. A pretty major piece of guidance, if you ask me. Who designs these things? I will call the helpline after the holiday and find out how to proceed. Let’s see how convoluted, complicated and frustrating this process will be. I have such high hopes.

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It may seem odd to be writing about the passing of Ed Asner, but I need to say something. He reminds me of my dad, in the best way possible. He always has. When I watched the Mary Tyler Moore show back in the 70s, and I loved that show for many reasons, I noted the likeness. Some of it was physical. My Dad was built similarly, that burly, Eastern European thing. They both were also balding with a heavy beard. My Dad could probably have shaved twice a day. I suspect Mr. Asner could do the same. But more than that, it was the sense of decency Mr. Asner radiated. The gruff exterior belied a tenderness. Maybe I read too much into Lou Grant and other characters he played, but that is what I sensed.  And that was at the heart of my dad. These last few days, as tributes came through my Facebook feed, each time I felt a pang of loss. Dad was not granted the length of years Mr. Asner was, he is gone more than 16 years, but I still feel it acutely. I mourn Ed Asner’s passing, too.

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I have spent much of the last week under the weather. I don’t want to assign blame, Daniel, but I caught a cold. Of course, since we are in the midst of a pandemic, I was concerned that maybe it was actually Covid. The delta variant has been spreading locally. I tried to make an appointment for a test and found it difficult to get one. All the area pharmacies were booked. I could get a slot the next afternoon, but I’d have to drive half an hour. I took it. In the meanwhile, I asked my husband to try to pick up an at-home test on his way home from work. He called around and found one at a CVS in Schenectady – not that far away. He brought it home. I read the directions carefully, followed them, waited the 15 minutes and found out I was negative. These tests are imperfect, but my son and granddaughter also tested negative, so I took a measure of comfort in that. The cold though wasn’t deterred by that information, it has gone through its various stages relentlessly. Sore throat, headache, sinus pressure, my nose running like a faucet (throw in a couple of bloody noses), then the cough. The cough is the worst part for me and takes the longest to resolve. I know I shouldn’t complain. So many others have it worse. But whenever I am under the weather, I get mad at myself. I take it as a personal failing. So, in addition to feeling poorly, I am angry at myself. I have been down this road many times and I still do it. I am disappointed in my lack of productivity while I am ill. I shouldn’t have gotten sick in the first place! I will not cough!!! The refrains in my head are singularly unhelpful. Maybe now that I have written it down, it will stop. Or it will stop when the symptoms pass…any day now.

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Two more covid -related complaints. We are once again trying to plan the celebration of Leah and Ben’s marriage. We are now three and a half months out. Once again, we are plagued by uncertainty. I am angry. It didn’t have to go this way. My other gripe is of the ‘first world’ variety. Most people are faced with lost opportunities due to the pandemic. College kids deprived of the full experience. Youngsters wearing masks as they start school. Cancelled proms. Job loss or forced career changes. Folks with other health problems having to navigate getting care. Seniors enduring damaging isolation. So much fall out. My issue isn’t serious, but I find myself resentful anyway. I am missing prime-time travel opportunities. Gary and I are in our early sixties. Thankfully still healthy. This would be a time for broader exploration. We are lucky enough to be financially able to do it too. I love travel – minus the hassle of air travel itself, that part sucked even before the pandemic. But that aside, who knows what the future will bring? There are so many places I want to go. Okay, I’m done whining. I know it pales in comparison to the price others have paid, including loss of life. But since I am venting, I thought I would put that out there, too. I invite you to vent, as well. It can be therapeutic – as long as it isn’t directed at an innocent bystander. A journal, online or on paper, may be best. Feel free to use the comment section below.

It Takes a Village

It is painful to watch. Aunt Clair pushes her walker down the carpeted hallway, ever so slowly. After ten or fifteen steps she pauses to catch her breath. I had not realized that the hallway was so long. Seeing my mother and Aunt Clair move through the world, my perspective on all kinds of things has changed.

The hallway from the elevator to my apartment is not really that long, not for a healthy individual. I have taken my health for granted, but my eyes have been opened. I can stand up quickly from a couch or chair without a second thought. Getting up off the floor is a bit more challenging. I can stand at the stove and cook dinner without needing to take a break. I can go to the supermarket, carry my bags into the house and unpack them – all without stopping to rest. I can take a shower without considering whether I am strong or steady enough to do it safely. My mother and Aunt Clair can’t do any of those things.

I have never been particularly grateful for my body. I usually eye it critically. But, seeing what can happen as you age, I am re-evaluating. While I have achy joints, they all work well. Kein ayin hara (Yiddish for ‘no evil eye,’ or ‘I don’t want to jinx myself’), I can play tennis, go for a hike, ride a bicycle. People my age and younger are not able to do some of those things. I have taken to thanking my legs and arms for functioning so well.

Bearing witness to Mom and Aunt Clair’s experience has made me aware of many things I had not given much thought to previously. The cycle of life is on full display. We start as babies, dependent on others to meet our needs. Many end up back in that position. We don’t want to believe that about ourselves. After living independently for decades, taking care of ourselves, making choices about what we eat, when we eat, when we sleep, where we go, that slowly slips away. The fact that it generally happens slowly, may ease the transition. We adjust to the new realities, we lower our expectations. We draw the circle of our life smaller and smaller. We may make peace with encroaching age and the limitations it brings, but at some point it is demoralizing. I don’t know which is worse – watching someone you love go through it or experiencing it yourself. (I know the answer to that, but it is heartbreaking to observe.)

We may become physically or mentally (or both) incapable of the activities of daily living. We need help.

Who provides that help? In some cultures, the expectation is that family steps up and in. Multigenerational homes are the norm. That may work, up to a point. Sometimes the needs go beyond what can be provided. American culture does not have that expectation of families, but it doesn’t compensate for the lack of it. We value rugged individualism too much and the vulnerable among us pay the price. I don’t know what happens in other countries, particularly those that have the long life span that we enjoy. I should do some research. Insight from readers would be much appreciated – please feel free to comment.

In America, if one is financially able, one can pay for assistance. But even if you have means, and insurance, it isn’t simple. Accessing insurance, researching options online, finding reputable agencies or individuals, getting doctors to write the necessary prescriptions, filling out the paperwork or electronic forms to get reimbursement – is challenging and requires persistence and some skill with technology. You would almost think that the system has been set up to discourage claims or deny payment (sarcasm alert!). It shouldn’t be that complicated! Most of our elders are not equipped to take all of that on. So even if you have money, you still need support.

Not all of us have those financial resources. For whatever reason, not earning enough, not planning ahead or suffering an unexpected financial loss (caused by bad health, an economic downturn, a natural disaster or bad luck), one can reach their seventh or eighth decade without much in the bank. Are government programs sufficient to meet the need? I think it is fair to say they don’t. Some services are available, but there are gaping holes. What are we, as a society, willing to pay to provide for our elders? What level of service, what is the quality of life we want to guarantee?

As we live longer and longer, many outlast spouses and friends. Not everyone has children. This is the situation that Aunt Clair faces. She has been single her entire adult life and she didn’t have a child. She is a very stubborn woman which has been a blessing and curse. She fought pancreatic cancer six years ago, surviving treatment – more than surviving. She bicycled to and from chemo….in Manhattan! From her apartment in Greenwich Village to Sloan Kettering, at Third Avenue and 53rd Street, she pedaled each way. Sadly, the cancer returned six months ago. She has resumed treatment. Other unrelated health problems have emerged. For a person so independent, who continues to be mentally sharp, the new limitations are a rude surprise, nearly impossible to accept.

Aunt Clair has experienced both the kindness of strangers and the invisibility that comes with being an elderly woman. New York City has a reputation for being a cold place to live, and it can be, but Clair has stories that show another side. One time recently she had an appointment with a doctor she had not seen before and had difficulty finding the office. Turned out she was on the wrong street. After exhausting herself going up and down the block, a younger woman stopped to help. She stayed with her until they sorted it out and found a cab – Clair was in no condition to walk the two blocks. I am grateful to know that there are good Samaritans out there. I know my mom has benefitted from help when she has needed it, too.

What is my role, as a niece and daughter? Clair has other nieces and nephews, each with a full life and responsibilities, their own challenges. Only one lives in Manhattan, albeit not close to Clair’s apartment, the rest of us are scattered around the Northeast. Mom has two other children, a brother and several nieces who have generously stepped in – and yet, there are still needs. It truly takes a village. Personally, I have no idea how to balance it.

When I returned home from New York City, having visited Mom and helped Aunt Clair a bit for a couple of days, I needed to recharge my batteries. I am fortunate to have a loving, supportive partner in Gary. Together we went for a long walk in the woods. My spirit is improved, but I still have no answers.

Visiting Mom early in the pandemic – before she needed oxygen full time
Me and Aunt Clair four years ago when she was cancer free

A View from the Vaccine Front Lines

Note: The following essay was written by my husband, Gary Bakst, a physician in New York’s Capital Region. Thank you, Gary, for sharing your experience and insight.

It has been a miserable year for all of us dealing with COVID-19.  The virus has killed over 500,000 Americans and infected about 30 million of us.  Some are still dealing with “long haul” symptoms, ongoing effects of the virus.  Sadly, many have lost loved ones to this scourge.  By now, very few of us do not know someone who has had it. 

Beyond the illness itself, the precautions being taken to prevent infection have entirely changed the way most of us live.  We are mostly staying home, working remotely, and avoiding gatherings.  There are no concerts, no theater, no ballgames.  Many of us are not willing to go to restaurants, bars, health clubs or yoga studios. 

For those of us still working in person, teachers, grocery workers, and health care workers, etc., there is the real risk of infection.  And in our office, that concern has similarly been significant.  There are about 90 employees in our office.  We represent substantial diversity in all kinds of ways:  race, age, religion, rural vs. urban, health status, educational and economic status. 

And we have about 300 people who come into our office on a daily basis for doctor’s appointments, to see physician assistants, nurse practitioners, diabetes educators, podiatrists or our surgeon.  They come in for labs and ultrasounds and bone density measurements.  It is a lot of people and a lot of appointments.  Altogether, since the beginning of the pandemic, it represents about 80,000 visits. 

Given the prevalence that COVID has had in our community, it was inevitable that, at some point, people who work in our office would test positive for the virus.  Yet, through the end of November, we had not had one employee test positive.  Our precautions were working. After the Thanksgiving vacation, that started to change. We had first one and then several and then a substantial number of employees test positive.  By and large, it did not feel like transmission was happening within our office although there was quite a bit of worry over that possibility.  Mostly, it was people who presumably became infected outside of work, possibly via contact with asymptomatic people who did not know that they were carrying the virus.

We had at least one example of a physician acquiring infection from contact with a patient who did not know they had the virus.  Personally, I had two consecutive Fridays in which a patient called (or a family member of that patient) that they had tested positive the day after their visit.  Sometimes people just don’t really think they have COVID – maybe they had minor symptoms and got tested but they answered our prescreening questions indicating no such issues. Getting those Friday calls led me to quarantine apart from Linda and certainly raised my anxiety level. Fortunately, I didn’t get the virus and neither did Linda.

Unfortunately, some of my patients have been very seriously ill with COVID-19 and several have died from it.  Many of them were lovely, sweet people with wonderful families.

Most of the employees who tested positive had minor symptoms or were asymptomatic.  Several were more significantly ill.  Several had to miss work for weeks or even months.  Those who were sicker longer have had some issues in terms not feeling entirely themselves even after returning to work. One of the many frustrating things about this pandemic is the unpredictability of the disease.

By early January, I had reached the point where I was seriously thinking that we needed to shut down the office for 10 days.  Then, the vaccine took effect.  I got my first dose on December 28th. It was 2 weeks after we received the first dose that all of this stopped.  Not all of our employees chose to get vaccinated, but the overwhelming majority did. 

Up until that point, the tension, the fear, in the office was palpable among many of our staff. Everyone handled it in their own way.  Some were clearly less concerned, and a few had to be repeatedly reminded to keep their masks on. 

Albany Medical Center saw up to 38 employees test positive on a single day in that period.  After vaccination – just over 90% of their employees chose to receive the vaccine – that number fell to either zero or one positive test per day.  Most of the employees who tested positive were those who chose not to get vaccinated. 

In terms of side effects, many of our staff did have some side effects.  Half of us received the Pfizer vaccine and half Moderna.  I did not notice any difference between those two vaccines in terms of side effects.  I personally only experienced mild arm pain with both doses (of Moderna).  But many in the office had more side effects with the second dose.  Some had fever and chills, some were achy, some had nausea, some were exhausted.  These effects generally lasted typically 12 to 36 hours.  I do not know of anyone in the office who had anything worse or anything that lasted longer.

There have been several concerns that people have raised regarding getting vaccinated.  I want to briefly comment about them:

  1. “They were developed too quickly – something must not be up to standards.”  Actually, they were subjected to exactly as much testing as all of the other vaccines that are produced, it was just that certain steps were done in parallel rather than sequentially.  While all kinds of factors allowed it to be brought to the public more quickly including the promise that our government would pay for many doses, no vaccine went to market until all of the usual safety and efficacy studies involving tens of thousands of people were completed. All three vaccines have been authorized by the FDA.
  2. “Since political pressure was brought to the process it must be tainted.”  While there has been all too much politics involved in so many aspects of our response to the pandemic, those in charge of the vaccine process, thankfully, resisted pressures to short cut the steps we take to ensure that these vaccines work and that they are safe.
  3. “The new technique of using RNA to make a vaccine means that my DNA will be altered or somehow there will be long term effects of the vaccine”.  The messenger RNA does not get into the cell nucleus and does not ever do anything to our DNA.  It is degraded fairly quickly and does not persist in our bodies.  mRNA vaccines have been used before and have been safe and effective.  However, never before has an RNA vaccine been used on this scale so it is absolutely reasonable to continue to monitor for potential adverse effects. 

We are now many months since the first volunteers received the vaccines and their safety record has been very impressive.  Their efficacy has similarly been very impressive as seen in our office.  And the disease that we are combating is dangerous.  We will not overcome it without vaccine.  More than 500,000 Americans have died from it.  With over 50 million Americans vaccinated, not one person has died from vaccine.  The risk of vaccine is so clearly low and the risk of being unvaccinated so very clearly intolerable, even tragic. 

Personally, I am so very grateful to be vaccinated.  I feel less vulnerable and less likely to infect other people.  Being vaccinated has not yet had much effect on the things I choose to do or not to do.  I am still quite careful at work and reluctant to go to places where people gather.  But I am hopeful that much of this will change as more of the people I know receive vaccines and I am encouraged that the availability of those lifesaving shots is increasing week by week.  I hope you are able to access a vaccine soon or have already had one and that it makes your life better and safer. 

Funny Jokes and Serious Matters

Note: This is a guest post by my husband, Gary Bakst, M.D. While I may question whether the jokes are funny (Gary didn’t write them!), I don’t question the seriousness of the subject he addresses. Thank you, Gary.

Jewish Humor – here are some jokes that have been around longer than I have:

  1. Why don’t Jews drink? It interferes with their suffering.
  2. My wife will buy anything that’s marked down. Yesterday she brought home two dresses and an escalator.
  3. A man can’t find a lawyer. He picks up the Yellow Pages and picks out a law firm-Schwartz, Schwartz, Schwartz and Schwartz. He calls up and says, “Is Mr. Schwartz there?  A guy says, “No, he’s out playing golf.” The man says, “All right, then let me speak to Mr. Schwartz.”  “He’s not with the firm anymore.”“Then let me talk to Mr. Schwartz.”  “He’s away in Detroit.  He won’t be back for a month.”“Ok, then let me talk to Mr. Schwartz.”  “Speaking.”
  4. I’d like to help you out. Which way did you come in?
  5. In New York’s Garment District, a little, old man is hit by a car. While he is waiting for an ambulance, a police officer tucks a blanket under his chin and asks him, “Are you comfortable?”  The man responds, “I make a living.”

It is that final joke that I am thinking about as I write this essay.  I grew up in a middle-class family and in a middle-class neighborhood. I remember when Linda and I struggled to make ends meet.  I realize that we are more comfortable today, but I still like to think that I am connected to the struggle of the average person/average family.  The reality is, every so often a patient says something that reminds me that I am not as connected as I’d like to believe.

They will tell me about the cost of an item – perhaps $10 – that is a big deal in their lives.  They are living on fixed incomes or small paychecks.  They have worked their whole lives but cannot afford things that I would take for granted.  While every expense is important, the one that we are most often speaking about is the cost of their medication.

This is a problem that has been mentioned often in the media.  But I don’t think that the real impact on so many people has been adequately discussed.  The stories I see in the news are about the most extraordinary examples.  They don’t convey the reality that I see people face numerous times every day.  The reality is, especially in the world of diabetes care, that we are in a time when there are great medications that can change people’s lives.  They can safely lower their glucose levels, protect their hearts and their kidneys, prolong their lives.

On the other hand, I have never seen a time in which so many people just couldn’t afford their medications.  It was not that long ago that medications were prescribed by doctors and filled at pharmacies and patients picked them up for no copay or small ($5-10) copays.  Now, the doctor writes the prescription and it goes to maybe a pharmacy, maybe a gigantic mail order facility.  The insurance company rejects the charge but doesn’t tell either the doctor or the patient why the med was rejected or what alternative would be covered.

Our staff spends enormous, frustrating hours, expensive hours, working on getting medications approved.  When a medication is approved – not necessarily the medication we had ordered but some theoretically similar drug – the patient is still left with frequently gigantic out of pocket expenses.

Some of this is related to the fact that medications are so much more expensive than they used to be.  The pharmaceutical industry is entitled to make their profits and needs substantial income in order to invest in the next generation of medications.  But too much of that profit comes from the US (as compared to overseas markets) and it seems like the average American is carrying a financial burden that is breaking their back.

On top of this, the insurance companies routinely reject claims, use intentionally opaque methods to keep us and our patients in the dark about what they need in order to approve those claims and even when they cover the medications, they leave too much of the charge on the shoulders of the patient.

Insurance companies typically use ever increasing premiums to herd patients into high deductible plans.  This means that you pay your premiums, but the insurance company may never spend anything on your care.  The situation is similar for those who receive their insurance through the Affordable Care Act (Obamacare).  While it is great that there is insurance that people can access, the insurance is often expensive and comes with high deductibles.  And, for those who get their insurance through Medicare, the development of prescription drug coverage (during the George W. Bush administration) is a great step forward but the coverage comes with that so called “donut hole” which means that you have to pay thousands of dollars out of pocket and then you can get back to where the coverage helps you out.

In the end, we are at a time of crisis in health care affordability and especially medication affordability.  Recognizing that I have no expertise in this topic beyond what I see every day in my office, I would make several suggestions that I do not hear from our politicians of either party.

  1. I would end the policy of not allowing Medicare to negotiate with pharmaceutical companies regarding the price of medications. Medicare needs that tool.
  2. Congress needs to pass a law limiting how much more any medication can cost in the US as opposed to the rest of the developed world. Perhaps up to 20% more but not the 300% more that we often see.
  3. I would outlaw deductibles over $1000
  4. I would limit how terrible any insurance policy can be and still be legal to sell in the US. If you are marketing your policy as insurance, it has to be helpful to people when they get sick or injured.
  5. I would require insurance policies to offer adequate reimbursements to hospitals such that they can hire enough nurses to truly take care of patients. Patient to nurse ratios are becoming dangerous and patients will be harmed.
  6. I would increase reimbursement to doctors and other health care providers for primary care services. This would continue the trend of reduced reimbursement for procedures and presumably make more doctors consider careers in primary care – not enough doctors are going into primary care.
  7. I would require insurance companies to make public how much money they spend on items other than patient care and to make public their procedures for approval of tests such as PET scans and for medications and expensive treatments. It is time to remove the curtain and give doctors and patients a fighting chance to get patients the care they deserve.
  8. Medicare is more efficient in translating money into care and I would require private insurance companies to make strides towards that benchmark in order to operate in the US.

There it is. That is my little manifesto.  The rantings of a comfortable doctor on behalf of his uncomfortable patients.  Now one last Jewish joke:  A Jewish grandfather takes his grandson to the beach when, suddenly, a gigantic wave sweeps the boy away.  Panicked, the grandfather looks up and prays to God, “Oh God, please bring him back.  Let him live.”  Just then, an even larger wave deposits the boy back on the beach unharmed.  The grandfather looks up and says, “He had a hat.”