I am in the haves category which makes me feel…
Fortunate
I feel fortunate to have both great healthcare coverage and the means to make up for the deductibles or for medically necessary items not covered. I have been using an insulin pump for 12 years now and essentially during that time, my blood sugar HbA1c has ranged from >6 – 7.5. Previous to that time it ranged up as high as 9 mg/dl.
I began using the Continuing Glucose Monitor/Sensors in 2007. CGMs wirelessly track my blood sugar trends and allow for greater blood glucose control via my insulin pump. What does that mean? The risk of complications and early death are reduced significantly.
Guilty
I sometimes feel uncomfortable talking about all the great technology and care I receive because of the immense health disparities that exist not only in places like Ghana or Vietnam, where insulin required for life is unaffordable and often not available – but also, on Main Street USA where so many families are unemployed or uninsured and unable to pay for the steep pharmaceutical and device costs so essential for best care.
Angry
As a US citizen, I am angry when I see other countries making strides to help families with type 1 diabetes (also includes families who have needs with type 2 insulin dependent diabetes). I am disappointed in the Affordable Healthcare Act (see Timeline for the Act here) because so much of the act relies on privatized insurance and while there are some reforms (end of pre-existing condition barriers for children), Obama’s Act is mostly political grandstanding.
P.S (I am a DEM and I voted for Obama. If you are a Republican and plan on voting that way, get ready for a much more terrible US healthcare benefit scheme).
What can we do about it?
At least 90% are type 2 and need help, and then there are the smaller group - yet still millions with type 1
The first-step is to get educated. Here is what other countries are doing to help children and adults with type 1 diabetes afford better care. (Diabetes supplies will surely become more available to all types of insulin dependent patients as technological device companies lobby for a wider range of coverage for ALL patients thereby gaining greater profits.)
Australia
The Federal Government of Australia and JDRF Australia have teamed up to provide an Insulin Pump Subsidy Program to financially eligible applicants. Recipients of the subsidy can receive 10% assistance (or $500 AU dollars minimum) and as much as 80% of the total cost. The program includes all consumables required to maintain the pump. The Federal Government provides the funding while JDRF AU supports the program with administrative assistance and PR.
Question: Is this something JDRF USA could support? Maybe it’s time to ask the Executive Directors?
The United Kingdom
The National Health Service provides all diabetes supplies (insulin, test strips and other medications) and in 2008 approved insulin pumps for children automatically under 12 years of age. Today, insulin pumps and all consumables are available to any patient with type 1 diabetes if:
- attempts to reach target haemoglobin A1c (HbA1c) levels with multiple daily injections result in the person having ‘disabling hypoglycaemia’, or
- HbA1c levels have remained high (8.5% or above) with multiple daily injections (including using long-acting insulin analogues if appropriate) despite the person and/or their carer carefully trying to manage their diabetes.
- One caveat – local PCT’s (Primary Trusts) for each county manage the NHS budget and therefore, some PCTs are more generous than others. Having lived and worked in the UK – I found the system worked for me and for many others I knew (and know) well.
Question: The NIDDK (NIH) seems unjustly focused on the study requirements of the FDA for big Pharma business, and not particularly interested in the health of the patient community. What we need are studies that prove the long-term benefits of insulin pump therapy and the CGMS. These studies should be weighted against the overall cost of diabetes giving rise to a state-funded program for “best care diabetes practices.”
While we are on the subject of the US Federal Government, State policies and other organizations to turn to for help, here is a primary list.
If you are in need or require assistance, I urge you to review the information available below.
NIDDK/NIH “Financial Help for Diabetes care” webpage
Federally funded, in case you didn’t know. GREAT for education. However, I have looked on this page and explored the links many times for information related to financial assistance and while it looks as though many avenues may be available for those in need – I have come up empty handed. It’s an embarrassment. This needs to change – NOW.
Providing Diabetes Health Coverage: State Laws & Programs
This website, facilitated by the National Conference of State Legislatures is actually worthwhile. This website lists all states and what each is accountable for in terms of diabetes care. Review this information and get informed and involved. This is the number one reason to call a state senator and start talking! You learn a lot about your state (how many in population are uninsured) and which has the best policies – valuable information.
I do not know if this organization is successful in helping patients, but it is a free service. If you are having trouble with an insurance claim or need assistance – this group will help determine whether your rights are being violated. I hear many people discuss how pump funding was discontinued or how Medicare stopped providing something. Here is a group that might have some answers.
Partnership for Prescription Assistance
Devices aren’t included in this. Ironically and for obvious reasons, only brand names are listed in their searchable database – it is amazing how hard-wired the US is to Pharma! Yikes! Fill out the form and see if you qualify for assistance. This works, but it takes time.
NeedyMeds works at discounting drugs and will help patients receive pharmaceutical assistance
NeedyMeds is a 501(3)(c) non-profit with the mission of helping people who cannot afford medicine or healthcare costs. The information at NeedyMeds is available anonymously and free of charge.
Comprehensive help for the needs of patients with serious, chronic illnesses
Type 1 diabetes IS NOT listed.
Chronic Disease Fund® is a non-profit, full service financial and medication assistance organization. We exist to improve the health and quality of life of patients battling chronic disease, cancer or other life-altering conditions who cannot afford the medications they so desperately need.
Type 1 Diabetes is NOT listed
American Diabetes Association Prescription Assistance
ADA lists all big Pharma companies who produce products for people with diabetes and invites patients to call the pharmaceutical numbers listed directly for patient financial assistance. This qualifies as a prescription assistance program. WHAT? This is infuriating. I am beginning to wonder if this organization hurts patient rights more than it helps?
United Healthcare Children’s Foundation
These grants provide financial relief for families who have children with medical needs not covered or not fully covered by their commercial health benefit plan. The Foundation aims to fill the gap between what medical services/items your child needs and what your commercial health benefit plan will pay for.
Type 1 diabetes doesn’t appear to be excluded
Parents, patients, and families – we all need to get more involved. Type 1 diabetes is a serious condition that requires expensive medications and devices for a healthy life, but as far as I can see – the word is still not out.
Either we need to put more pressure on the existing advocacy groups to do a better job for our rights (all non-profit section 501(c)(3) are tax exempt and exist only because the disease exists – so we in a sense pay dearly for their existence – regardless of membership) or facilitate the development of better advocacy representatives. Our Federal and State Governments do the minimum, and well… all I can hear are patients complaining. This information took me about 2 hours to gather. Can you imagine what we could achieve in a million hours — only 1 million type 1s would need to give one-hour.
Time for change is now. Do you have the time?
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