January 13, 2017
Dear Senator Toomey,
Republicans in Congress are already taking action that they hope will lead to substantial changes or repeal of the Affordable Care Act. I am one of your many constituents in the Keystone state with a serious chronic condition for which the stakes could not be higher.
Like thousands of others across this state, the removal of safeguards put in place by the ACA could have a very serious impact on my physical as well as financial health, as I expect prescription drugs and other treatments will become too expensive for myself and others to afford.
Earlier this month, I called to request a meeting with you or one of your staff, so I could discuss my experience and help you understand what’s at stake from a living example. When I did not receive a reply from your staff, I went down to your Market Street office in Philadelphia, and after being denied entry to your office and being asked to fill out a form in the building’s lobby, am still waiting for your reply. Given the urgency of current actions in Congress, I am hoping you or your office will arrange to meet with me soon.
I am requesting a meeting, because as a person living with Multiple Sclerosis for over a decade, I have insight into the shortcomings of the health care system and health insurance policies, and the impact that the ACA has had on both that many other people don’t have. My experience is not unique, it is shared by thousands of other of people across this state with conditions that require ongoing and intensive treatment, such as cancer.
"...people like myself are not looking for handouts, but merely for a sane health care system that does not place an undue burden on people with illnesses who need to be focused on staying well."
I am requesting a meeting because I think it will be helpful for you to see for yourself the box of injectable medication that I have taken over the past 12 years to prevent my white blood cells from attacking my brain and spinal cord, preventing the paralysis and possible early death that is common with the illness I live with. I think it may help you to understand what’s at stake, when I explain to you that the price of this medication has surged from $7,000 a year when I first started injecting it in 2003, to a shocking $80,000 a year currently.
I also want to explain to you that this medication would become unaffordable if we return to the way things were before the ACA was passed. Under the old insurance policy I had before the ACA from one of the region’s leading health insurance companies, I would now be paying more than $32,000 a year for this medication (that’s before insurance premiums and costs of other services). Currently, due to protections the ACA put in place, I pay about $11,000 a year for premiums, deductibles and out-of-pocket expenses, which is difficult but manageable.
I would also like to explain to you that people like myself are not looking for handouts, but merely for a sane health care system that does not place an undue burden on people with illnesses who need to be focused on staying well. I personally can work up to 60 hours a week at my job producing materials that local business and non-profits use to promote themselves. I am able to make ends meet currently, but would have to find a much different job that I am not currently qualified for were I forced to pay $32,000 a year for medication.
I know this is a difficult issue that many of your constituents do not understand because they have not had the misfortune of being diagnosed with a serious illness. But make no mistake, right now there are thousands of families young and old across this state who in the not-too-distant future will come to understand firsthand, when they or a loved one is diagnosed with a serious illness, that the old health care system destroys lives and families if the ACA safeguards are removed.
I’m sure it would be difficult for you to support legislation knowing that what you do will lead to worsening of illnesses, untimely deaths and severe financial distress and bankruptcies among your constituents who fall ill as repealing ACA safeguards will certainly do. I would welcome the opportunity to speak with you about these issues, so that I can learn how any changes you intend on making will prevent this from happening. Or if you think it’s appropriate for families across the state who play by the rules and have insurance to not be able to afford necessary medical treatment, and have their life savings wiped out and lose their homes because they had the misfortune of having a member fall ill, I would like the opportunity to hear you explain your reasons why.
I respectfully wait for your reply and hope to hear from you soon. You already have my information, but you can also get my contact information from this news site if necessary.
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Bob Finkelstein is a resident of Northern Liberties in Philadelphia.