My granddaughter is 21 years of age. She uses an insulin pump and her body only seems to respond to some very specific brands of insulin. She works at a bank on a part time basis for $12 per hour. She lives in West Virginia and not with her parents. Her insulin cost upwards of $2K/month. She was on her stepfathers insurance but nolonger. She tried to get assistence from Medicaid but was told she does not qualify because she earns too much money at $12/hr. She needs the insulin to live but even if she spent every penny she earns each month on insulin she would still come up short by over $500 with no money for anything else! Anyone have any suggestions how to proceed from this point? She already is depressed to the point of potential suicide.
I admit I’m not very knowledgeable in this area but earning $12/hour and part time at that sounds like it should fall under Medicaid guidelines. So forgive me for asking but I’m wondering if she has appealed the decision, or if there may be another reason for Medicaid turning her down - perhaps they believe she still falls under her stepfather’s policy?
I started a new dental plan this year, terminating the old one effective 12/31/19 and stopping any premium payments. However, claims to my new one were being denied because of “duplicate coverage” while my old plan was declining the same charges because I was no longer with them. My dentist’s office reached out to me so they could get paid, and It turned out the problem was that I had not submitted documentation that my old policy ended. Once the new company had confirnation that theirs was the only policy (an official letter from my old provider - it was not difficult for me to obtain) they covered me retroactively, effective as of my January 1 start date.
For what it’s worth, there is a website/app called Goodrx that shows prices for medications at different pharmacies within an area. Prices may vary greatly, and the service has coupons for individuals without insurance. A bottle of Humalog in my area ranges from about $300-$420; with their coupon it costs around $175 at most pharmacies.
My doctor has helped me with a bottle on occasion if I’m having issues with my insurance.
Please keep us posted.
Hello @EWBoswell54. If you think your granddaughter may harm herself I urge you and your granddaughter to call the suicide prevention hotline https://suicidepreventionlifeline.org/ at 1-800-273-8255
Also please consider local authorities or the police for a welfare check.
Edward, Just realized my reply was sent prematurely. Picking up… Physicians are generally familiar with wording necessary for appeal. It should contain current treatment & reasoning for it as best method to manage her diabetes, control bg & avoid complications.
Assistance/Resources. Since your Granddaughter is depressed she may need support to make phone calls. Even if organization or person called can’t help they can often provide other leads.
Diabetic associations & organizations. One is American Diabetes Association. Phone #s available on web.
Former clients received assistance from both State & Federal Representatives & Senators on variety of issues involving government agencies & bureaucracy. It doesn’t cost a thing to ask for assistance. She should remind person that they are her representative.
Does WV have public advocates or public ombudsman? People in such positions can help guide people new to health assistance systems. State as well as Federal Government may even provide guide to understanding Medicaid in the State.
I agree with Joe on being concerned about your Granddaughter committing suicide. As former mental health worker I can say that ignoring it & hoping it goes away is worst thing family & friends can do. Any promises of keeping quiet about threat should be ignored. Having a loved one or friend angry is better than a completed suicide.
Suicide holiness often provide followup or phone support for the caller.
Hi @EWBoswell54. I wanted to check in and see how your granddaughter and you are doing. Please let us know.
As I understand the situation my granddaughter was applying for Medicaid on her own. If I had known beforehand of the issue I would have recommended engaging an advocate who was more qualified to navigate the process. It is my understanding that qualification for Medicaid is dependent upon factors beyond simply your income level. I would have thought that she fell well within these criteria but I don’t have all the facts because I just learned about this from her older sister a few days ago. Part of the issue is that her body is only responsive to very specific insulin and of course it is probably the most expensive insulin on the market. I am a Type 2 diabetic and use insulin but my insulin is Novolin R and Novolin N which is available from Walmart with 2 bottles costing $35. The concept that insulin can cost upwards of $2000 per month and there is no recourse for someone such as my granddaughter boggles my mind! I thought the Affordable Care Act was going to make health care affordable, NOT! She can not find a full-time job with insurance because of the COVID-19 BS and she can not get assistance with her medications unless she quits her job and goes 100% on the dole! This is insanity! I am going to tell her to quit her job, apply for welfare, and use PEL Grants to go back to college and earn an associate’s degree in medical technology. If I knew how I would engage an expert in Medicaid Advocacy to assist in a Medicaid appeal. I doubt she will listen to me because I am an old man and I don’t think she thinks I know anything
Thank you for your concern. My granddaughter is depressed but I don’t think she is likely to hurt herself. She has family support all around her so she is not in this alone. If I could I would buy the insulin for her but that is simply not economically possible. Her Father would as well but neither he or I could cover it completely even working together. My wife, her grandmother, and I are retired and living 500 miles south and simply don’t have that level of disposable income. Her Father lives nearby to her but he has a business that he is trying to grow into profitability. Frankly even if 4 or 5 of us in the family pooled our funds we would still come up short! I really hate the medical profession and the Pharmaceutical companies in particular!
Edward @EWBoswell54, although I can feel your frustration with wanting to help your granddaughter, there are other options. Yes, this young lady does need insulin every day, so she should begin looking at choices.
From what you wrote, it appears as if she is wanting to only use the very latest analog derived insulin, which is the very highest priced insulin. There are very effective insulin formulations [rDNA] that she could try which would cost retail about 1/13 of what she is now trying to pay; in other words, she could buy 13 vials of Humulin-R for what one vial of Humalog would cost. True, the Humulin does work a bit slower than the Humalog, but it is just as effective for managing diabetes.
I had diabetes for 40 years before these fancy - read that as expensive - new analogs came along and did just fine with managing my diabetes, not perfect, but still good.
Another “hope” for her, under the executive order issued by President Trump a couple of months ago, as of January 1st she may be eligible to get a month’s supply of insulin for a maximum out-of-pocket cost of $35.00.
Hi there, Jackie from JDRF here. I just want to point you to a few of our resources for people who maybe struggling with insurance coverage or their insulin costs. JDRF has a resource listing the many different programs run by the insulin manufacturers to help access insulin at a reduced cost. Getinsulin.org is a good place to start. You can see some other options at Help with Your Diabetes Prescription and Insulin Costs - JDRF You can explore insurance options for your granddaughter at healthcare.gov. Even if she is not eligible for Medicaid, she may be able to get her own private health insurance plan for a pretty low premium, but TODAY is the last day to sign up. We have a resource to help people figure out what plans might work for them at Type 1 Diabetes Health Insurance Guide.
Also, I want to note that some of the insulin manufacturers are offering $35/month insulin for those who qualify for their program. The executive order only affects Medicare Part D plans, so only Medicare beneficiaries that signed up for a Part D plan that offers $35 insulin will get see that cost savings start in January.
Hi again @EWBoswell54. As @Hen51 suggested, an ombudsman or advocate may be able to assist with a Medicaid appeal. A medical social worker may also be able to assist with the process, or direct her to someone who can.
Forgive my saying so as I imagine you and family are doing all you can imagine for her mental health; however a very close family member of mine suffered from depression and so I know professional help is needed. To be specific, there are two types of depression that I am aware of: “being depressed” over a difficult situation or loss - this type often improves over time, as things change; and clinical depression, which is due to a chemical imbalance. The latter requires medical treatment first and foremost, with family support working closely alongside. In a way the two are similar to the two main types of diabetes.
In my family member’s case the signs that something was about to happen were not always obvious, and she would decompensate - suddenly and rapidly spiraling downward to the point of needing emergency intervention: each of those occasions resulted in several weeks stay in hospital as they worked to restore the chemical balance.
I am not a medical professional but am sharing my personal experience and understanding. I believe others on the thread have worked in the area and I would encourage you to listen to their words. I hate to add more to your plate of concern but did not want it to go unsaid.
When I was your granddaughter’s age I too wanted to prove my independence in life and decision making - I didn’t realize how wise the advice was that my elders were trying to share. If she will not listen to you, perhaps her sister will be able to get her to listen to sound guidance.
Unfortunately, the only way to get professional help for her is for her to want it. I am fully aware of these issues but experience has many times proved to me that all I can do is suggest or offer but in the final analysis she has to want the help. Thank you for your concern and suggestions. My wife and I will be seeing her next week and we will try to help her down a more productive path.
@EWBoswell54. I agree with you. I just hope that things go well. I can also offer that I used an older formulation of insulin called R, for decades, and it is much less expensive especially without insurance.
Hi, at the beginning of the pandemic, Eli Lilly was running full page ads in major newspapers, regarding “Americans affected by Covid-19 who rely on Lilly insulin.” They say that they have “meaningful solutions to help people get the medicine they need.”
The accompanying phone # was : 833-808-1234 for the Lilly Diabetes Solution Center. I called it just now and went through the first couple of menu buttons, it seemed like the line is “active” at least as far as I went.
Thank you for that information.
I am a type 2 diabetic and I use Novolin N and Novolin R and both are available over the counter from Walmart. For me they work fine but according to my endocrinologist that is not the case with everyone. Apparently my granddaughter does not respond well to anything other than the particular insulin she currently uses in her insulin pump. That is at least what I have been told by her Father, Mother, Older Sister, and her. I do know that she has had her endocrinologist write letters to that effect to the insurance companies that she had previously been covered when still a minor living at home.
Hi again. I like to try to cover as many bases as possible when it comes to ideas so I thought I would share another; so while I don’t know your your granddaughter and the details of her care, a thought came to mind that I thought I would suggest - at least as a temporary measure.
First of all, I hope Lilly’s program or the resources suggested by @RMcM, and @JackieLeGrand-JDRF of JDRF are able to help her get what she needs. There is a saying, “Don’t let ‘the perfect’ [relatively speaking] be the enemy of ‘the good.’” So as she waits for those, and maybe a Medicaid appeal - while she does not do well on insulins other than those used with her pump, perhaps she would do “well enough” on an alternate formulary on a temporary basis until she is able to get coverage for the type that works best for her. If she is not able to afford to get what works well for her, using “next best” (spoken with caution) may be better than having nothing at all.
As far as I know only Humalog and Novolog can be used in pumps, so I’m assuming she uses one of those; and any alternative would require going on injection, which she may not care to do but…
While people must use a pump to stay in control,
I’ve heard of people who do better on shots;
And for many or most of us, we can manage on shots if need be, though the pump works better.
I respect that this last one may not be the case for your granddaughter, but looking at the injection alternative may be something to keep in mind.
I myself have switched back to shots on occasion for short periods of time; and while I did not get the same degree of control as with my pump, in my case that did not mean they were not working, but rather that we needed to make adjustments to tighten things up to come as close as we could to “pump control” (whatever that may look like). That may mean adjusting doses or trying a different formulary altogether.
I’m sure you know there is a wider set of choices of insulin for injection - some of them older and less expensive. Each has its own “pattern of operation,” so it might be possible to find a combination of basal and bolus insulins that would work for her at least until she gets coverage for the one she uses in her pump.
I know I’m reading between the lines and making some assumptions - on a forum such as this it’s necessary to some degree and may generate some food for thought. So forgive me for any mis-interpretation; but still it could be worth a discussion with her doctor about adjusting the injectables, or using a different type at least for a while, until she gets the coverage she needs. That discussion is something she would need to take charge of herself, but the initiative could give her independence and a sense of power over the situation.
Hi @EWBoswell54. I’m guessing you will be seeing your granddaughter soon if you’re not already there. Enjoy the time with your family. I hope things go well when you speak with her.
Thank you for your comments. I have no doubt that she uses the pump primarily because she is not responsible enough to do it with self-monitoring, diet, and injections. I will be seeing her later this week and I hope I can get more information. As of last Friday, she was able to obtain the insulin she needed for the remainder of December and most if not all of January. It really depends on how much she does her due diligence.
I’m so glad she was able to get what she needs for the next few weeks. Keep us posted on progress - yours and hers. Safe travels.
Jut thought I would pass on a little of what I learned durring my visit with my granddaughter. Her Dad and step mother have found hat the insulin she needs can be purchased using GoodRx for less than $200 per month. She also may be going full time with benifits at the Bank where she works although that is still not certain. Bank management says that they want her to stay with them so the ball is in their court. She does have other employment options in the area that provide better pay and benifits, but she does not want warehouse work. I spoke with her about this and told her that without furthering her education that may be her best recourse. I think her attitude is that I just don’t understand. I really do not think that medicaid is what she needs. Like far too many she needs to take responsibility and be an adult. The next few months will be interesting. Thank you for your concern and comments.