As we speak new legislation is being proposed which would help many people obtain IV Saline infusions at home; the Medicare Home Infusion Site Care Act of 2015 .
Bettemarie Bond, a patient with Dysautonomia including a malfunctioning GI tract, and Mitochondrial Disease, once able to obtain these helpful infusions, suddenly found herself unemployed and on Disability and at the mercy of the Medicare system for all her medical needs. No longer covered by her previous employer’s private insurance, the stark reality hit her full in the face as she realized that she was unable to obtain them.
Her self-advocacy led to the launching of a grass roots effort in her hometown in Philadelphia to get Medicare to cover home infusions. Little did anybody know that her online petition would gain such traction on a Federal level and interest some key legislators!
Kendall Van Pool, Vice President of Legislative Affairs for the National Home Infusion Association, wrote an article here which goes into more detail about this ground-breaking piece of legislation and a few other related bills.
The original bill, HR 2581 contained verbiage which would not have allowed infusion at home, as it would contain a change in method of reimbursement referred to as Average Sales Pricing (otherwise known as ASP). This is a reimbursement method that applies to physician reimbursement (and in particular applies to delivery in an “outpatient hospital” department). Falling short of true access by patients who are often homebound, several legislators were concerned that such legislation as the first version was too restrictive in not allowing patients the choice to be treated at home with this modality.
Next came HR 6, the 21st Century Cures Act. Chairman Fred Upton (R-MI) of the House Energy and Commerce Committee is hopeful that this version passes in the Senate.
An election year; 2016 could be just the right time for Congress, and thus Medicare, to fully embrace this option if enough patients, families, and healthcare professionals come out in strong support of this exciting new legislation to give patients more choice and flexibility in their treatment and in what setting it’s delivered.
Those of you who follow this blog regularly know that this is something that has helped me when I was hospitalized in November and that my struggle continues to obtain regular IV Saline infusions at home for my Dysautonomia. As my gastrointestinal difficulties continue to increase I am finding it difficult to add any more pills to the growing number I must take by mouth. My GI tract really can’t tolerate anymore by mouth, so for people like myself and Bettemarie Bond, going the IV route makes better sense than to try to force more pills down one’s throat into a stomach which is already compromised and most likely not absorbing what it takes in.
For those who can get it IV Saline can make a notable difference and allow one to enjoy life despite one’s chronic illness, while those who cannot get it often suffer a long and agonizing medical decline and de-morale as they continue to find these infusions always just out of reach and at best short-lived while only receiving them in an infusion center or within an inpatient setting (insurance or money permitting).
Notice in her video clip above that Bettemarie says she had her heart rate drop during a procedure. This just happened to me today as I was having a Colonoscopy. I had a really rough time even before going under mild anesthesia; suffering chills, dehydration, and changes in heart rate, as well as Myoclonus triggered by the body’s inability to keep me warm enough.
Ironically the nurse who had hooked up my IV saline before I was taken to the room where I had my procedure had in her haste not secured the tubing to the IV and another nurse found me bleeding all over the bed and the Saline half empty leaking on the sheets. Having gone through drinking the prep (which invariably strips one of electrolytes) and then not drinking my usual 24/7 ice water in the few hours prior to the Colonoscopy left me all the more in need of all the Saline I could get. I had to fight to get the nurse to wait in recovery for the last bag to finish because she was in such a rush to hurry me out the door and to fill the bed with another patient. It was as though I were a car at the local Jiffy Lube rather than a human being in need of care after coming out of the Propofol.
It didn’t seem to matter how many times I reminded them of the fact that I am Dysautonomic. It was as though their biggest concern was for their employer and the dictates of the facility, not so much for my best interest. I found it crass that they were more invested in meeting a quota of patients served per day than in serving the individual patient with the dignity and care that all human beings deserve. (I will say that the one man in anesthesiology who mentioned my heart rate dropping was an exception to the otherwise high-volume/low quality workplace. He did go out of his way to make me as comfortable as possible given my complex medical fragility, and for that I am thankful).
Let’s all work together to make this legislation the law of the land. Leave a comment, share, write your representatives in Congress, and/or CMS and HHS, and sign the petition so that the Medicare Home Infusion Site Care Act can improve the lives of Medicare patients who need/benefit from home infusion. Although not a cure, these infusions can make life more meaningful and reduce suffering until cures can be found.
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