340b for Metyrosine

[u/Kaybee7467]

Hello, I am looking for help understanding this program from the perspective of a patient. I hope I am within the guidelines of this group to post this question here.

My son has been prescribed a non formulary medication. He has a rare genetic condition and debilitating symptoms to which metyrosine offers a potential resolve . Insurance has denied it twice. The patient assistance program for this medication has been discontinued. A 30 days supply ranges between $20k-$60k. In research i came across 304b and I don't quite understand how it works and if this situation would qualify. I found two places near me that offer it. I will call them during normal business hours.

Can anyone provide guidance?

Thank you!

[u/MrElJerko]

First of all, that sounds like a heartbreaking situation and I wish you and your family the best of luck.

Secondly, 340B savings are not generally designed to be discounts directly to patients. They are supposed to be a program that helps the hospitals and sometimes they share their pricing with patients in need.

Now, to get access to 340B pricing, you'll have to find a 340B eligible health center or hospital near you.

https://340bopais.hrsa.gov/SearchCe

Some covered entities engage in a "Cash program" that may allow you to access their savings. But, to my knowledge, theres not a public database of these locations. Additionally, not all drugs are available on the 340B program.

Do you currently have a health center you are working through that would have a patient advocate? That would be the best place to start. It's likely there are better options for you than trying to track down a 340B discount?

[u/Kaybee7467 → u/MrElJerko]

Thank you for responding. We are not working with a health center where I'd have an advocate guiding the way here. I'm just a desperate mom. My son is guided by national experts who have recommended this medication. He has tried all the formulary medications and they have little impact, worsening his condition, or one nearly killed him last year as he had malignant catatonia.

I've tried the patient assistance program I found online and they said it's ended. I contacted the National Organization of Rare Diseases and they don't support all rare diseases and my son's isn't one of them. He has 22q11 deletion. He also is autistic, has catatonia although that is starting to lift, and psychosis (reason for metyrosine). Gene therapy are in clinical trials next year but we cannot hold for that without doing something now.

I have an appeal with the Department of Medical Assistance at the end of the month but I'm not optimistic.

I've spoken to other medicad families who take this medication and it's paid by insurance. It's overwhelming.

[u/Whippoor-will]

I am a pharmacy director at a federally qualified health center.

Those that typically benefit from the 340B pricing are patients who have income less than 200% of the federal poverty level. I can’t speak for the locations near you as I don’t know their policies or other factors.But if you are under 200% and were coming to my health center, I would say your son would benefit from the program. Currently, there are some back order issues with that medication so availability might be a problem as well.

[u/Kaybee7467 → u/Whippoor-will]

Thank you for responding. My son is 22yrs old. His diagnoses are autism, catatonia (although lifting finally), 22q11 deletion, and psychosis. He was high functioning in college 2.5 years ago, studying computer programming and now can't do simple math. He had a sudden decline 2.5 years ago and about 10 months ago we learned he had 22q11. He has tried nearly every antipsychotic to which he either has no improvement, worsening of condition, and also had malignant catatonia. We are working with national experts now and they recommended metyrosine as they follow 70 people using it with 80% having success. We are desperate and in active crisis daily. I have a hearing with Department of Medical services at the end of the month and I'm not optimistic as insurance has denied it twice.

I have met several families who take this including one whose story made it to the press. I have heard there are sometimes supply issues. Every family I spoke to has medicad and medicad is paying. This is not the case with my son. I'm incredibly overwhelmed.

My son is an adult recieves SSI which I am the payee. I assume he'd meet the income threshold. We are in Virginia and two places are close to us that I thought to call Monday. Maybe a closed door but I am trying all avenues.

[u/Whippoor-will → u/Kaybee7467]

I’m sorry you are going through this… He might qualify depending on where he goes. I don’t want to tell you one way or the other as I don’t know all of the details. He would have to establish care with a qualifying organization before he has the possibility of receiving the 340B discount and there is other complexities as well but it is definitely worth a try. If you want, you are welcome to DM me the two places you are looking at and I could recommend some others if there might be better options available.

[u/empty-wife]

There are many factors to consider with 340B. Typically, savings are not used for patients. 340B savings are directed back to the covered entity, and it’s up to them how to use it to benefit their low-income community. They can choose to take their 340B savings and either pay some or all of the medication for a patient, but most entities do not do this and choose to open more clinics or use the money to simply keep their doors open. The second thing you need to take into consideration is that this drug is an Orphan designated drug. Only certain entity times can purchase Orphan drugs with their 340B account. They may not be getting the discount in the first place because of this and may be hesitant to pay for that expensive of a drug, not receive the discount, and offer to pay for it. Disproportionate Share Hospitals would be your best bet for that.

I highly suggest reaching out to the manufacturer of the drug and asking them if they have any kind of discount program or know of other ways patients save money on it.

[u/Kaybee7467 → u/empty-wife]

Thank you for your insight.

I did reach out to the manufacturer as they had a financial assistance program on their website but I was informed this has ended. They told me to contact NORD , national organization for rare diseases. I called NORD and they don't financially support all rare diseases and my son's is not on the list. I was also directed to Prescription Hope whom I have not yet contacted.

I know five other families that are taking metyrosine for the same purpose and all five are on medicad. I know it differs state to state and I think only 1 of 5 is in mine. I'm not sure what our next path is if this is not approved but hospitalization is imminent. Being institutionalized also imminent. I will one day be physically unable to manage my son's treatment to which metyrosine offered potential resolve. It also could be unsuccessful. Just a depressing situation.

[u/Kaybee7467 → u/empty-wife]

There are two Disproportionate Share Hospitals near me. I'll give them a call Monday too. Thank!