One more thing I might add..... Depression is a good diagnosis to win at getting disability. I have had that for years along with the lupus, kidney failure, pulmonary hypertension, etc, and I got approved right away. I have noticed that depression and treatment plays a big role in receiving disability. I hope you get the meds you need. There are a lot of medicine cards that come in the mail randomly for medication discounts. The pharmacy will also have some of those discount cards to help pay with prices of meds. (If you have no insurance.)

Benlysta has the Gateway program for people with health insurance.

Check Partnership for Prescription Assistance. Healthwell Foundation, and Patient Advocacy Foundation and Needy Meds.

I think this is one of the biggest challenges when it comes to managing lupus-paying for medication and care. I am in that boat right now myself...uninsured, 64 years old, single, care and meds right now at about $1,000 a month which is really low for lupus!

First, when it comes to Social Security disability, the conditions are not either lupus or heart failure. They are BOTH. In order to get disability for lupus you have to (1) prove that you have lupus and (2) show how lupus affects various body systems making you unable to work. Number 2 would be your heart. Do not let them separate the two. Go to ssa.gov and search for disability and then lupus. Then look at the list of impairments to qualify for heart issues.

Help paying for medicine and care varies widely from state to state and even from city to city. Call 211 to get the United Way help line. Sometimes they are more helpful than others, depending on the operator you get. They can only give you the information they have. You want to find out if there is an indigent health care program in your area. These programs usually help the uninsured or under-insured who do not qualify for other assistance. You are more likely to find this in metropolitan areas than in rural areas. Next, ask for the social services office of your county. Even if they cannot help, they may refer you to organizations that can.

If your expenses are very high, and it sounds like they are, you might apply for medically needy/share of cost Medicaid. It may be called something else in your state. Each state is different. If you are not happy with the answer you get, very politely ask to speak to a supervisor. You are most likely talking to a person in a miserable job who makes little more than minimum wage to provide answers from a list he or she has in front of them. Persist. This is MOST IMPORTANT!!! Get a notebook. Write down the day, date, and time of every call. Ask the speaker for identifying information like an extension number, name and last initial or employee number. Write it down. Write down what they tell you. WHY? When you call back, they will say, "Who told you that? That's not how it is." You need to be ready to answer.

Finally, go to lupusflorida.org and click on the resource page. There are tons of links there. In general, if you earn less than about 2.5 times the poverty level you will qualify for some assistance from the drug manufacturer. Benlysta is notoriously generous in helping. I believe that is Glaxo Smith Kline company. pparx.org can help you identify these programs.

All the best.
Linda

I have heard that Benlysta will possibly help with costs. You will have to check with them (email or otherwise) or your doctor to see if there are any programs or alternatives you can use. I am going to talk to my Rheum in a week about Benlysta also. Good luck honey. I feel your pain.