The Struggle With High Cost Medications

Life with a rare disease or chronic illness has a way of taking over; juggling responsibilities, appointments, kids, and family. Take your meds on time. Eat something. Try to work. Order your meds. Unless you’re lucky enough to have perfect drug coverage the last one is always a heartbreaker. People who battle chronic illness often struggle to cover their high-cost co-pay share of prescription medications.

Newly diagnosed patients are often not aware of the one bit of information that may help ease some of the expense. There are programs out there who offer copay assistance specifically for individuals who have drug coverage but are faced with covering high out-of-pocket costs.

Often programs are often offered by the specific drug manufacturer, but there are also many non-profit organizations who will work with your pharmacy or physician, so cost doesn’t keep you from filling your prescriptions.

Every day, millions of chronic disease patients are forced to go without the medication and treatments that can drastically change the quality of their lives. In fact, 3 out of 10 Americans cannot afford to cover the expensive medications they need—even with insurance. –mygooddays.org

For example when Gary first began his chelation therapy with Ferriprox our out-of-pocket share was $1,000 through his employer-provided insurance. When he was forced to stop working we purchased our own policy; our copay ballooned to $1,200 a month.

Many superficial siderosis patients, for this reason, opt to bypass their health insurance and order their Ferriprox through a drug broker in Canada. We did too the first year. In the end, we turned to Dohmen Life Science Services, the only authorized Ferriprox supplier in the U.S. They are quite willing to work with a non-profit copay assistance program for you.

When we were building our resource and links page, we found a Texas non-profit which offers not only copay assistance but also helps to find health insurance coverage, premium expense, and travel help. Good Days has a list of 30+ medications (see the list below) they will help you with including Ferriprox.

Many people react badly to the suggestion they look into one of these programs. People are proud, and they see this as charity, but there are strict requirements to qualify for help.

 

This isn’t charity it’s a helping hand for a budget-destroying expense

 

Gary takes 209 pills a week, so we’re lucky he’s covered under the VA health care program now. The VA keeps our co-pays manageable. Some co-pay assist programs target their help to the elderly or disabled who are covered by Medicare.

Eligibility:

Applicants must have a valid social security number and be receiving treatment in the U.S. or U.S. territories (Guam, Puerto Rico)

Patient must have valid health insurance with at least 50% coverage (with the exception of deductibles) to be eligible to apply for copayment assistance (no discount cards/programs)
Note: most copayment assistance programs will request the patient to have Medicare insurance

Patients seeking copayment assistance must be diagnosed with a Good Days diagnosis that is open for enrollment, and prescribed an FDA-approved treatment for that diagnosis

The total household income must be at or below 500% of the Federal Poverty Level (FPL) based on the patient’s household size.

Application Information Checklist

1. Patient contact and demographic information
2. Health insurance information
3. Diagnosis and medication  (Superficial Siderosis will be diagnosed as ‘Iron Overload’)
4. Prescribing physician’s name and phone number
5. Estimate of patient’s household income

We’ve done the household income math for you

 

500% of the U.S. poverty level is typical for upper-income guidelines. In case some readers are shocked help is offered at these incomes consider cancer patients. They may have four or five high-cost co-pay specialty prescriptions. It makes you realize how easy prescription costs will bankrupt you.

 

Good Days Assistance  Income Level (500%) Cap
Persons Living In The Household/Total Household Income Limit

1/ $60,700
2 /$82,300
3 /$103,900
4/ $125,500
5/ $147,100
6 /$168,700
7 /$190,300
8 /$211,900

In short, there are options available to help with your medical expenses. It’s a tough decision many of us are forced to make. Hopefully help is on the horizon.

 

We have the application for co-pay assistance available for download if you would like to read it.

 

 

 

Good days medication program formulary list:

5
5-Fluorouracil
A
Abraxane
Actimmune
Adcetris
Adcirca
Adefovir Dipivoxil
Adempas
Adriamycin
Afinitor
Agrylin
Alecensa
Alimta
Alunbrig
Ammonul
Ampyra
Anagrelide Hydrochloride
Anastrozole
Arimidex
Aromasin
Aubagio
Avastin
Avonex
Azacitidine
B
Bactrim
Baraclude
Besponsa
Betaseron
Blincyto
Budesonide
Buphenyl
C
Calcitrol
Camptosar
Capecitabine
Caprelsa
Carbaglu
Carboplatin
CeeNU
Cidofovir
Cimzia
Cisplatin
Clolar
Cometriq
Copaxone
CoPegasys
Cortisone
Cotellic
Cyclophosphamide
Cyramza
Cystagon
Cystaran
Cytovene
Cytoxan
D
Dacarbazine
Dacogen
Daklinza
Darzalex
Decadron
Decitabine
Deferoxamine Mesylate
Desferal
Dexamethasone
Dexpak
Docefrez
Docetaxel
Doxil
Doxorubicin Hydrochloride
Droxia/Hydrea
DTIC-Dome
E
Eloxatin
Empliciti
Entecavir
Entocort
Epclusa
Epivir
Epoprostenol Sodium
Erbitux
Evomela
Exemestane
Exjade
Extavia
Eylea
F
Fareston
Farydak
Foscarnet
Foscavir
Faslodex
Femara
Ferriprox
Firmagon
Flolan
Folfiri

R
Ravicti
Rebetol
Rebif
Remicade
Remodulin
Revatio
Revlimid
Ribasphere
Ribavirin
Roferon-A
S
Saizen
Serostim
Signifor
Sildenafil Citrate
Sodium Benzoate
Soltamox
Solu-Medrol
Somatropin
Sovaldi
Sporanox
Sprycel
Stivarga
Sutent
Sylatron
Synribo
T
Tafinlar
Tagrisso
Tamoxifen Citrate
Tarceva
Tasigna
Taxol
Taxotere
Tecentriq
Tecfidera
Technivie
Tev-Tropin
Thalomid
Tracleer
Transarterial Chemoemobilization
Tykerb
Tysabri
Tyvaso
Tyzeka
U
Uptravi
V
Valcyte
Valganciclovir
Valtropin
Vectibix
Velcade
Veletri
Ventavis
Veripred 20
Verzenio
Victrelis
Vidaza
Viekira Pak
Vinblastine
Vincristine Sulfate
Vinorelbine Tartrate
Viread
Visudyne
Vistide
Vitraset
Voriconazole
Vosevi
X
Xalkori
Xeloda
Xofigo
Xolair
Xtandi
Y
Yervoy
Z
Zaltrap
Zanosar
Zelboraf
Zepatier
Zinbryta
Zorbtive
Zortress
Zykadia
Zytiga

 

About roriandgary

Our life after a diagnosis with the rare disease superficial siderosis. We share our thoughts on how we deal with the clinical symptoms and life changes that come with a chronic illness.

Don’t be shy