by: Aruna Muthumanickam, MD
It was an unremarkable Tuesday afternoon during my Internal Medicine inpatient rotation in a small village town in India called Talegaon. The ward stretched before me, at capacity with 24 beds, each bed occupied by a patient on a variable spectrum of disease severity.
“Doctor…” a voice called out, and I looked up from behind the nursing station to find the son of one of my patients standing distraught.
I smiled at him and asked what had happened, in Marathi, the preferred local language.
“My mother just told me that you’ve recommended we perform a blood test on her and buy these medications,” he replied, as he showed me the slip of paper my team had handed to her this morning during rounds. A complete blood count to evaluate her anemia, as evidence by the pallor of her conjunctivae, and a prescription for iron, folic acid, and vitamin B12 supplements.
Two days ago, she had been admitted for worsening abdominal distension and dull abdominal pain and had been diagnosed with an ovarian mass, likely malignant, via ultrasound. She was now awaiting a CT scan of her abdomen and pelvis and a surgical evaluation for possible treatment options versus palliative care.
“Yes,” I replied solemnly. A part of me knew where this conversation was
heading and wished my premonition would be incorrect. “We believe she has anemia due to her ovarian mass, and we would like to better understand its type and severity,” I continued, pausing at anemia to explain what it meant.
He looked down at the money he held in his hand, and I couldn’t help but look down at it too.
“I only have 200 Rupees right now,” he said, and I nodded in understanding. The equivalent of $2.72 (USD). The cost of the blood test was $4.08, and the medications were about $3.40. He could not afford either, let alone both. He had just taken out his third loan to pay for the cost of the CT scan, roughly about $81.5, and between this and his 9,000 Rs, i.e. $122, monthly income, and three mouths to feed at home, there wasn’t much room for unexpected costs.
In this village town of Talegaon in India, staying true to population demographics and epidemiology, most patients were admitted for pulmonary, gastrointestinal, or genitourinary infections, stroke, or liver disease. Patients would be brought into the ER via ambulances, taxis, or rickshaws, and would be triaged by the medical officer, and if necessary, admitted to one of three medical wards. While the hospital stay itself was free, medications, blood tests, and imaging studies were the responsibility of the patient. That is to say that self-pay is the norm and not the exception, and most of our patients did not know much about healthcare, let alone healthcare insurance.
Fast forward to now, almost three years since that incident. Here in New York City, every day, my patients and I are faced with new challenges in obtaining affordable medications.
A few months ago, I was taking care of a diabetic patient at my primary care clinic, who, due to a lack of insurance coverage, was paying out of pocket for Insulin.
I checked his last HbA1c to gauge his glycemic control over the past 3 months and it was markedly elevated, indicative of inadequate insulin intake.
“How much insulin are you taking with each meal?” I asked him, concerned that perhaps our prior discussions on insulin usage had not been clear.
He stared at the ground and eventually replied, “I adjust the dose, here and there.”
He then divulged that he was taking lesser doses of Novolin than was prescribed so that he could use the same Insulin pen for longer. We had often discussed how poorly controlled diabetes could eventually result in nerve damage, visual disabilities, and long-term kidney damage. But if he had to be able to put food on the table right now, this was one of the compromises he had to make.
There is profound helplessness in not being able to facilitate the best medical care for your patient, despite having the intention and knowledge to do so. I called a few pharmacies in the area, and ultimately found one that sells Insulin pens at 50% of the cost he was paying now. When he walked out of the clinic more relieved than when he came in, it felt like a small win.
But most stories do not have a happy ending. I had once cared for a young woman with Anti-Phospholipid Antibody Syndrome who had to pay a $600 monthly copay for Apixaban, a blood thinner, to prevent recurrent miscarriages and strokes. Her alternative option was another blood thinner – Warfarin, a drug that has a high risk of life-threatening bleeding, requires frequent clinic visits for dose adjustments, and has a high rate of drug-drug interactions, but is relatively cheaper than Apixaban. This is not an easy choice to make, but tens of thousands of doctors and patients make such difficult, life-altering decisions daily. When she came in with her fourth episode of thrombosis, it was evident that she was not taking Apixaban or Warfarin, due to the cost of the former and the inconvenience of the latter.
What breaks my heart, as I recollect some of these striking stories of patients, is their unanimous demeanor. They look at their feet, avoiding eye contact, and for someone who prides herself on being able to read her patients, I am unable to tell if they feel shame or dejection.
The story of the mother and son in the village of Talegaon does not track back to the same roots as the drug pricing crisis here in the United States but it does serve as evidence that the menace of healthcare unaffordability is pervasive. It is a humbling reminder that we are very far away from achieving the goals of Universal Health Coverage.
From 2016 to 2021, the world of insulin manufacturing has seen major flux, with congressional admonition and efforts of not-for-profit organizations inciting a wave of temporary reforms and initiatives including reduced price programs by Eli Lily and Sanofi. However, at about 320 dollars for 10 mL, Novolog continues to be out of reach for many diabetics.
With Biden’s Executive Order passed earlier this July, urging FTC to encourage competition, and further endorsing CMS negotiation, this summer was one of reservations and optimism. This fall, we hope, will be one of action. The HHS Comprehensive Plan for Addressing High Drug Prices sets the tone for motivations and discussions, bolstering support for democratic drug pricing legislation. It highlights the need for capping out-of-pocket spending for Medicare Part D beneficiaries, champions direct federal negotiations and highlights administrative changes that can be made to increase competition. Currently, all eyes are on the Build Back Better Plan and its multifold healthcare provisions, including increasing health insurance coverage among Black minority populations, Medicare negotiating power, and expansion to dental and vision coverage, among others. While the debate on reducing drug costs versus crippling research opportunities ensues, from Sen. Wyden’s office in Oregon to Sen. Burr’s headquarters in North Carolina, one thing is for certain: Americans are paying much more for their medications than they should, and the time to change that is now.