Delivery of Care/Opinion

Nothing is easy

A day in the life of navigating the health care octopus

Photo by Richard Asinof, masks by Kendra Leeks

An array of masks, a necessity of life in the midst of the coronavirus pandemic.

By Richard Asinof
Posted 1/25/21
There is no easy path to follow when navigating the health care delivery system today, which seems filled with Kafka-esque pitfalls.
How do patients make their voices heard in the legislative process around new health care legislation? What are the consequences of making wrong decisions and bad decisions by health insurers and regulators, short of litigation? What are the actual financial benefits for a health insurer reinstating co-pays for physical therapy visits in the midst of a pandemic? What is the current incidence of gioblastoma in Rhode Island and is there any correlation to industrial sources?
With Gov. Gina Raimondo departing to Washington, D.C., to serve as Commerce Secretary in the Biden administration, what is the status of numerous initiatives that she launched, including redesigning long-term care in Rhode Island? Or, the Reinvention of Medicaid and with it, accountable entities for managed care organizations? And, the health data strategic plan now underway? Also, what is the status of RI Innovates 2.0? Also, what is the status of the innovation campuses initiative being done in partnership with the University of Rhode Island?

PROVIDENCE – I was surprised to receive a phone call late Friday afternoon, asking me if I wanted to receive a vaccination for COVID, from the office of my former primary care provider, with whom I had not spoken to in two years.

Puzzled, I asked why I was able to receive a vaccine, because I didn’t seem to fit into the categories under Phase One, according to the R.I. Department of Health. I was not 75 or older; I was not an essential worker; and I was not working in the health care industry in direct care of patients.

The person calling responded that because I was 65 or older, I qualified, and also because I had underlying conditions. I was told that there was a slot available on Monday afternoon. I asked when. The person on the phone sought to confirm that I was still a patient of the primary care provider; I said no, that I had been under the care of a different primary care provider for more than two years. We’ll get back to you, the person said, and hung up the phone.

I immediately called my current primary care provider, speaking with the physician’s assistant, seeking to clarify what the policy was regarding vaccinations. The physician’s assistant said that I would not be given a vaccination under the Phase One guidelines. She herself had just received her first vaccination shot – and was as puzzled as I was about the apparent vaccination offer.

Co-pays reinstated
The day before, I had gone for my weekly physical therapy appointment, one of the key elements in my continuing care for my current health condition – auto-immune encephalitis, which has been eating away at my ability to walk.

I was surprised to learn that I now owed a co-pay of $25 for each visit, a consequence of my Medicare Advantage health insurer reinstating co-pays, which had been suspended in August of 2020 as a result of the coronavirus pandemic. Yet I had never been notified of the change, and neither had my physical therapist.

When I asked my health insurer for clarification about the policy change, I was told the following: “In August, [my health insurer] temporarily expanded a number of benefits across most Medicare Advantage plans, including $0 co-pays for additional health care providers and services, such as physical therapy. Those benefits ended on December 31. The [health insurer] does, however, continue to waive costs for any COVID-19-related tests and treatment.”

I responded by saying that it seemed odd, given the continued increase in the number of COVID-19 cases and hospitalizations in Rhode Island, such a change in policy would take place, if the initial policy change was in response to the COVID-19 pandemic. My comments were forwarded on to the Medicare Advantage team.

Telehealth confusion
On the recommendation of my neurologist at Beth Israel Deaconess, in consultation with me during an in-person visit in November, we agreed that it would be good for me to engage with a clinical social worker to be able to talk about the continuedl stress of navigating the health care delivery system, as a result of my efforts to obtain the necessary treatments for my condition.

In October, I was initially denied treatment, and subsequently had that decision overturned, after having communicated with the chief medical officer at my health insurer. After my initial round of infusion, I had developed a severe dermatologic allergic reaction to the drug being used, and was forced to seek treatment from a dermatologist.

However, my attempts to arrange a telehealth appointment were stymied, because the information [incorrectly, it turns out] given to the clinicians at Beth Israel was that under Rhode Island regulations, social workers that were not licensed in Rhode Island were not allowed to conduct telehealth sessions with patients living in Rhode Island.

Instead, working through my primary care provider, I was able to secure a social worker to talk with me.

However, I appealed the initial decision, which resulted in the determination, some eight weeks later, that the information that had been apparently provided by the R.I. Department of Health to the health insurer and to the social workers at Beth Israel had been incorrect.

Which, of course, makes me curious to see how the language in the new legislation pending before the R.I. Senate, S0004A, which inserts the term, “clinically appropriate” some 27 times in the proposed bill, instead of the previous language, “medically necessary,” will be applied.

Would what happened to a patient seeking to use “telehealth services” during the pandemic offer some clarity to legislators pondering the language in the new legislation?

The next round
I am currently scheduled for my next round of infusion treatments this coming week, using a different drug than my initial round, to which I had an allergic reaction. In each case, my treatment had been denied at first and then was overturned on appeal, after I wrote to the third-party authorization firm responsible for making such decisions. It seems the person making the second denial had not read the file notes from when the first denial was overturned. So it goes.

Needless to say, I am thankful, more than thankful, that I am able to receive the needed treatment, but I cannot help but wonder how many patients in a similar situation have been denied treatments.

Health care is personal, health care is complex, health care is expensive, and, in many instances, health care delivery can be confusing – even for someone well versed in the details of how the health care delivery system functions.

Would it have been better to not tell the truth in order to receive a COVID-19 vaccination? What were the financial considerations that led to the health insurer reinstating co-pays for physical therapy, in the midst of heightened concerns around the spread of the virus in Rhode Island? How many times can I go to the well to overcome denials from the third-party authorization firm in order to receive potential life-saving treatment? Why make it so difficult to receive telehealth services for counseling to be able to talk about the stress and anger around difficulties in navigating the health care delivery system? All good questions.


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