Heartless Healthcare System Is Helping to Kill a Friend
Health care is a big topic among the politicians these days. While everyone is spouting opinions about how to solve the problem, my friend Randi is dying. Why? She has an illness that requires a private insurance company to make timely decisions about medicine and surgery.
The insurance company is dragging its feet. A cynical person might conclude that the insurance company is rationing care to avoid paying for my friend’s illness. Health care is about people, not about money. My friend is in a desperate situation, and the healthcare system is helping to kill her. Do you think Gov. Christie, President Obama or Mitt Romney cares about this?
Inside a modest, well-kept house in Manahawkin lives the La Rocca family. Randi’s husband, Keith, answers the door and ushers me into the living room. Their daughter Carina, 7, shyly says hello. I say hello to Keith’s son, Owen, 12, who then ducks back into his room. I sit on a couch as Keith goes to the master bedroom to help Randi get up from bed. As I wait, I notice the sound of an oxygen-generating machine in the living room. A tube runs along the floor from the machine to the master bedroom.
Several minutes later, Randi shuffles into the living room wrapped in a blanket. I move to a chair so she and Keith can sit together on the couch. Randi is trailing an oxygen tube behind her. The tube leads to her nose. She also has a tracheotomy tube in her neck that has been placed there to allow removal of excessive secretions that are caused by chronic inflammation and deterioration of the trachea, the part of the body that permits air to travel to the lungs. Without the tracheotomy, Randi would suffocate. Her breathing is labored, and when she talks there is an echo in her voice resulting from the sound emitted simultaneously through her mouth and the tracheostomy.
Randi and Keith La Rocca were married about 15 years ago. I have known the family as fellow members of Grace Calvary Church in Ship Bottom for the past five years. Keith plays the bass guitar during worship services. Randi, when she had the strength, interpreted the worship song lyrics into sign language for the hearing impaired. Two years ago began her latest bout with the disease. She had to stop her ministry at the church last year when her symptoms got worse.
Randi has suffered from many ailments through the years. She was born prematurely and was missing cartilage in several joints at birth. Since childhood, she has suffered from recurrent asthma, bronchitis and pneumonia. Apparently, all of these problems have been the result of a more serious disorder.
When I met Randi and Keith several years ago, I had no idea she suffered from chronic illness. She was always a bright-eyed optimist, generous with friends and with a heart for anyone who suffered. Randi was an energetic lady. She always walked fast, talked fast and thought fast. She was happy to see you, and she let you know it with a hug and a smile.
Today, she still has a smile, but she is now moving slowly and without energy. As she talks, she sometimes forgets that she needs to speak slowly and with pauses to catch her breath. Instead, she talks in rapid bursts followed by gasping. Her temperament is not compatible with the debilitating illness she suffers from.
At this point, the doctors are saying she has a rare disorder called bronchiolitis obliterans organizing pneumonia (BOOP). Given her history of prematurity, a much more serious disorder called bronchiolitis obliterans, which is linked to the use of ventilators (mechanical breathing machines) in some premature infants, may also be the cause. Both conditions are rare, but BOOP is reversible in many cases. Bronchiolitis obliterans is not reversible, and severe cases often require a lung transplant. Randi is unable to withstand the side effects of steroids, which are used to arrest or reverse the inflammation that results in bronchitis and pneumonia. Steroid use resulted in what Randi calls a pseudo-tumor that pressed against her optic nerve and caused permanent blindness in one eye. To reduce the pressure from the inflammation in her brain, doctors had to put in a shunt to drain the cerebro-spinal fluid, one of several complications resulting in numerous emergency surgeries and hospitalizations in the past year.
Whether Randi is one whose BOOP is not amenable to conventional treatment or she has the more serious bronchiolitis obliterans, her doctors are recommending a lung transplant. Because of her current compromised condition – symptoms of pneumonia, elevated temperature and immune deficiency – the doctors have prescribed a drug called immunoglobulin to improve her immune system functions in anticipation of a lung transplant. Unfortunately, her insurance company consistently delays its approval of each administration of this drug so that there is too much time between treatments. Without a timely repetition of immunoglobulin therapy, there can be no cumulative beneficial effects.
To make clear what the insurance company is doing here, an analogy is required. We all know that we need to take antibiotics as prescribed by a doctor. Imagine a prescription that says “take one pill a day for 10 days.” Now imagine that an insurance company approves only one pill at a time and delays its approval of each pill for a month. The antibiotic would not work. By delaying approval of each immunoglobulin treatment, the insurance company renders the treatment ineffective.
Randi has almost no time left for an insurance company to engage in bureaucratic delays. Her life ought not to hinge on inefficiency or on delaying tactics. But apparently it does. How many people die each day in this country because of insurance delays is anyone’s guess.
It is clear that Randi has suffered with respiratory infections for many years. She has been diagnosed with a variety of respiratory infections, but only recently have doctors identified the underlying disorder causing these illnesses, namely BOOP (or even bronchiolitis obliterans).
As a friend, I pray for miracles. As a friend, I pray that doors and hearts will open and result in timely approval of any and all treatment that will help Randi survive this life-threatening illness.
Many others in this church community and I look to God for help and comfort in times like these. But we also know that we are God’s hands and feet. So I sit here writing about my friend Randi, knowing that God already hears us all, but also praying that someone in a position to help will soften the hearts of the bureaucrats and enable my friend to get well.
Harley Thompson lives in West Creek.