By Jeannie Wraight
For the past seven days I’ve been without my main prescription medication for my heart and pulmonary hypertension, Revatio. I’d like to say that this is a rare occurrence, but unfortunately, this is the seventh time in the last several years this has occurred.
Pulmonary hypertension is a rare, often fatal illness that affects approximately 1 million people in the U.S. It is much more common in people living with HIV than in the general population, although the connection as to why has not been established.
Without Revatio, the symptoms of pulmonary hypertension quickly resurface. They include difficulty breathing and increased pressure in the heart, which could lead to cardiac arrest, dizziness, blackouts, abdominal and lower extremity swelling, extreme fatigue, and weakness. Needless to say, the absence of this medication can lead to a life threatening situation.
In most cases of an interruption in medication, the circumstances are usually out of the patient’s control. In my case, the issue is usually a lack of a prior approval from my insurance carrier; a long and tedious process that must be completed by the doctor or his/her staff. This almost always turns into a blame game between the doctor’s office and the pharmacy, with neither willing to take responsibility for getting the situation resolved, leaving me with worsening symptoms and little recourse.
So what can we do with system failure, especially when the prescription is for a life sustaining medication where a missed dose can cause drug resistance?
Sometimes, self-advocacy isn’t enough. Mistakes are made in medical care, pharmacy care and social services more often than anyone would like to admit. It’s essential to have a friend or a friendly organization or institution there to help you when you’ve reached the limit of what you can do to help yourself.
Many AIDS Service Organizations (ASO’s) offer case management as a stopgap to system failure, but having a case manager isn’t always enough. You need a GOOD case manager. Someone who will make themselves available when you need them and has the experience and wisdom to cut through red tape and get what’s needed… fast! Finding that special someone will take a little looking around, but it’s really worth the effort.
Another option for addressing system failure is finding an advocate in your church. Talk to your pastors, parish nurses, or healthcare professionals who volunteer their time to assist people who need advocates, and ask them for help. People and processes move more quickly when they know you have someone actively looking out for you and supporting you.
If an ASO or your church isn’t an option for you, find a trusted family member or friend to help you through difficult, system failure situations. Remember, you don’t have to navigate system failure alone.