Privilege, privileged – the word has come to my mind a lot lately as I think about my treatment and healthcare compared to others’. The “others” I speak of in this case all have access to healthcare, so I guess they too are ”privileged“: a special benefit that is available only to a particular person or group. (macmillandictionary.com) Many people in our world do not belong to the Access to Healthcare Club at all.
My mind begins to confuse the definitions and ways the word privilege is used as I consider my lung cancer treatment. The definition above doesn’t tell anything about the person or group, but in this case privilege feels good and not so good.
I definitely feel it is a privilege (something nice that you feel lucky to have) to have qualified for a clinical trial at Dana-Farber Cancer Institute. It feels really nice and lucky to be there. We work(ed) hard to get there (years of employment earning health insurance, paying fully for that health insurance now that I can no longer work, driving to Dana-Farber (250 miles one way), and on and on… But it is a privilege that even someone WITH health insurance living in some regions of THIS country cannot access. Clinical trials for my targeted therapy drug Lorlatinib are only available in a few places in the country. This drug targets only two very specific gene mutations/drivers(more on how cancer cell mutations happen), ALK(in 3-7% of NonSmall Cell Lung cancer) and ROS1(1-2%). We are lucky drugs are being developed for such a small number.
Today Lorlatinib may be available for Compassionate Use (Expanded Access), but it was very difficult to acquire in this manner until recently (now that it is near FDA approval.) I know this because not long ago one of the “others” with ROS1 developed resistance to crizotinib, the only FDA approved targeted therapy drug for ROS1. (Have I ever said that because of this mutation, standard treatments don’t work?) So, after crizotinib stops working, a ROS1 lung cancer patient has little hope unless she can get into a clinical trial. This patient lives in a region where there was not access to a trial. Drive to one, fly to one you say! Not if the person is not well enough to do so or hasn’t the financial resources to do so. Maybe she doesn’t quite meet the criteria. How about compassionate use you ask? Not available in this case. What?!!? Time’s running out. In this instance, the last I knew lung cancer patient advocates began reaching out to the drug company and the ROS1 experts in an effort to acquire treatment for this patient. I was not able to learn if help came in time.
Privilege: a special benefit that is available only to a particular person or group
I belong to a FaceBook group for ROS1 patients from all over the world. Nearly all are lung cancer patients. We are able to share information and learn from one another. I’ve found it immensely helpful in my search for understanding of this disease. This group is available only to ROS1+patients and their caregivers. A privilege that is available to anyone who would need/want it, if they have internet access, and can read and understand the information.
Even those with the education, reasonable financial resources, and health care access cannot assume the privilege of receiving my level of treatment. Lorlatinib isn’t available in all parts of the world. And, the newest of these drugs ( Tyrosine kinase inhibitors)that treat ROS1, entrecinib, isn’t available even through clinical trial right next door in Canada, according to an “other”. (That will still make only 3 drugs, 1FDA approved, to treat ROS1, and those pesky cancer cells really know how to build resistance to the drugs.)
I know what it was like before my first targeted therapy drug. I was dying. I did not build resistance to it (but had brain progression). I am privileged to be treated in a facility where I have scans regularly, where I know when I have a symptom (such as with the brain progression) it will be looked into quickly, where treatments are known and available, where a plan is ready if cancer overpowers the drug. I know of an “other” , living in another country, who died while waiting for treatment to arrive. I am so sorry this happened.
Without the many privileges I enjoy I wouldn’t be here, drinking tea by the Christmas tree, wood fire warming the room, still trying to sort the good and bad of the definitions of a word as it applies to my experience with healthcare. I know the circumstances of my life (from childhood and education to the love and support of Dan and our family) have equipped me to access the best level of treatment. But does that mean I should be privileged, should belong to the club when “others” with the same needs are allowed to die because they can’t access the correct treatment? A treatment that IS available, but not accessible for that person. I can’t change the world, but gosh, at least in our country, it seems like access to known lifesaving healthcare should not be a privilege.
And, by the way, have you heard me say lately that LUNG cancer research is way underfunded? It is the deadliest (433 Americans per day) and least funded when compared to the other common cancers. I’m making my voice heard to my representatives, and urge others to do the same. Oh yes, and radon is the second leading cause of lung cancer – just thought I’d get that in there.
I’m privileged to be able to serve on the Family and Patient Advisory Council of the Maine Lung Cancer Coalition MLCC. More on this work later.
Finding joy in the everyday im my cozy home, making memories, and loving life with Dan, family, 3 little dachshunds, and 2 Nigerian dwarf goats – that’s me, living a life of …