Hello Internet, My name is Daris, and I live in South Florida. I have a debilitating bleeding disorder called Hemophilia - and right now I need your help with affording my life-saving medical costs. — My Condition Hemophilia; is a bleeding disorder where, because my blood does not clot naturally, it can bleed internally, into my joints, my muscles, or in the worst case into my brain and other organs… Thankfully it is mostly my ankles and elbows that cause the largest issue; however, it’s rare I go more than even 1 week without issues… As a genetic disorder, I was discovered to have this when I was only 2 days old, and since then it has been the up-hill battle against a body that will not listen to me, a society that doesn't want to understand an “invisible” disability, and health insurance companies whom prioritize their bank account over the health of their subscribers. Physically, as I mentioned, when I have an internal bleeding episode it typically manifests in my ankles, or elbows: the joint will swell greatly with blood from the inside, causing it to eventually lock in place completely immobile, unable to support any weight and with great pain. The treatment; both to alleviate this bleeding when it occurs, and as constant treatment to help prevent bleeding is Clotting Factor Replacement therapy, usually in the form of (highly costly) intravenous (IV) infusions which I typically administer myself, and have done so for most of my life. While making myself a human pin-cushion sucks… it is better than blood swelling in my joints, kidneys, or my brain; all of which have happened over my lifetime so far. Hardships I’ve faced include emergency brain surgery at 6 years-old to correct bleeding on my brain; Removal of scar tissue from my ankles when I was 15; Internally bleeding kidneys around 17; and in the day-to-day living, it has always been a back and forth roller coaster between looking normal one day, and then having my arm in a sling or using crutches or a wheelchair the next day, because I suddenly can’t use an elbow or ankle for a few days while it heals. Because of this condition I have spent my life needing to be overprotective of my joints. This internal bleeding can be surprisingly severe and spontaneous; Even normal activities like cooking or other home chores can cause just enough minor injury in a joint, to start the bleeding process and immediately cancel plans, and sometimes prevent me from working at my job temporarily. In fact, I lack the body function constancy that other people don’t notice…When I wake up every morning; I don’t know if I’m going to be able to walk or use an arm on any given day. — My Current Issue For the last several years, getting my medication has not been a problem; While my Health Insurance isn’t the best, it’s the only one available where I’m located which will cover my medication at all… and I typically have managed to pay with the support of Copay Assistance from the manufacturer of the medication. However, this is where I need your help, Internet… With my current coverage, if I didn't have any assistance, my insurance premium & out-of-pocket costs, would be 15,544.96 per year ~ that is 42% of my Gross Income because I only make under $40,00 per year even with the decent job I have. While I have had assistance previously; In 2024 laws were changed or added in the state of Florida so that Copay Assistance no longer counts toward health insurance out-of-pocket max or deductible (at the Insurance Provider’s choice to maximize their profits this way)… meaning; that wen I have ordered medication this year (2024) which has a $12,000 copay.. the most they can charge me is my current out-of-pocket max of $9100, but I have no way of reasonably earning or saving for that; and I think nobody today with any disability should have to provide that much money just to “stay alive”. Until now, my Copay assistance has paid this cost; but they only pay about 10,000 per-year… Now, I would need the Copay Assistance to pay almost 10,000 every MONTH, because the insurance company will only count that money toward my full cleared coverage if I directly pay that out of my personal pocket — Which is something I cannot financially do, I’ve realistically never even had that much in my bank account at one time, and trying to open a credit card to pay for this would make it cost more in interest, that I still wouldn’t be able to earn and pay off. — Right Now I have gone through several foundations and resources for Copay assistance for general use and specific to my bleeding disorder to get me through this far into the year; While there are others out there I have spoken with, they have already expended their funds for the year and are unable to help until next year — but I may not make it to next year. The medication order I just received was covered by the manufacturer of the medication out of compassion, but they will not likely do that again. I have reached out to numerous resources to see if there is anything that can be done financially with the assistance, but there is little hope at this time. The medication I have now will only get me through the end of July 2024, and then I will no longer have medication in August. Without medication on hand I will likely have to go to the hospital if/when I begin to bleed (as happened in January 2024 when my insurance delayed covering my medication)… And if I’m hospitalized, and cannot work to make money, I will be trapped in the hospital like a prisoner, because the hospital will not release me unless I can secure medication for at-home use; which I cannot do unless I can afford to directly pay the Insurance company in the first place. So I am here to ask you dear Internet. For my next order of medication, I need your help to pay this out-of-pocket cost, so that the next month and the rest of my year will be covered. In the reality of insurance, this out-of-pocket will only be enough to get me through this year, and I do not yet know what my options for health insurance in 2024 will be... so I will still need to reach out for support from programs in the future… But at least your assistance right now, will give me the chance to continue my life, and be able to keep searching for more opportunities and assistance for the next year without being confined to a hospital bed. You have my thoughts and best wishes, and my thanks for any life-saving support you can provide. May your day face the sun, as I hope mine will again. “hacym’e solu’u koreym da san” Thank you - Daris C.
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