About Lupus

Jessica’s Coping with Lupus Corner

Important Updates for the Lupus Community

Jessica Rowshandel, M.S.W.
Jessica, Rowshandel, M.S.W.
Director of Social Services
S.L.E. Lupus Foundation

Usually my column answers questions that you readers write in. But this month, I’d like to point out how two policy changes are helping lupus patients.

You may not immediately see the connection between sunscreen and affordable healthcare! What could they possibly have in common? Both are undergoing policy changes that are important for the lupus community to know.

Affordable Health Insurance

As of July 1, 2011, premiums for the Pre-Existing Condition Insurance Plan (PCIP) have dropped in many states by up to 40%. Before the PCIP was created in 2010 by President Obama insurers could deny coverage for someone with a serious chronic illness like lupus, asthma, diabetes and cancer.

While PCIP has made it easier for people with pre-existing conditions to obtain health insurance, its cost has been a source of criticism; premiums can be upwards of $400 - $600 a month!

Now, in addition to the drop in cost, PCIP no longer requires proof of having been denied coverage. Instead, you need to submit a letter by your doctor stating that you have a medical condition. Unfortunately, the Plan still requires a six-month period of being uninsured.

Find out if your state is affected by this new policy. The price decrease is only mandated in states where the program is federally run. If you need help enrolling in PCIP or finding affordable lupus care in your region, contact me and I will help connect you to your local lupus chapter.

New Sunscreen Regulations

Summer is at its height in the U.S., which for people with lupus means taking extra care to apply sunscreen to prevent flares. But there’s some new scoop on sunscreen. After long consideration, the FDA has put out new rules on sunscreen:

Currently sunscreen manufacturers are only required to protect against UVB rays, which cause sunburn. The problem is that UVA as well as UVB rays can lead to cancer and promote flares in people with lupus. The level of protection against UVB rays is indicated on the sunscreen by the SPF label.

Some sunscreens are labeled “broad spectrum,” meaning they offer protection against both kinds of sun rays, but there is no current standard for what that means, exactly, for UVA rays. The new regulations will require manufacturers to meet certain standards for UVA rays, which will help us feel more confident that we are really getting proper protection from both types of rays.  Sunscreen manufacturers must implement the new regulations within the next year or two depending on their size.

For tips on sun protection read “Lupus and Your Skin.” You might also consider checking out clothing from stores who claim UV protection like Uniqlo, Coolibar and Sun Precautions.


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Disclaimer: This website and its contents are designed for educational purposes only. Jessica Rowshandel, MSW is the S.L.E. Lupus Foundation’s Director of Social Services. She is not a physician. The advice provided is for educational and informational purposes and the Foundation does not recommend or endorse any particular treatment or therapy. The information provided here should not be used for the purposes of diagnosing or treating a medical or psychiatric illness. It is not intended to be a substitute for professional care. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care. If you have or suspect you may have a health problem, you should consult your health care provider. Telephone calls, emails, and online content do not constitute counseling services in any way. The S.L.E. Lupus Foundation does not provide any medical or psychological services to its patients and users. For an accurate medical or mental health evaluation, participants should seek an evaluation from a qualified healthcare professional. S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.

Comments

@Ravi, I am sorry to hear all

@Ravi,

I am sorry to hear all that is going on with your sister. While there is no cure, there are many treatment options for lupus. Here is an article that you might find helpful:

http://www.lupusny.org/about-lupus/lupus-treatments

Here is another:

http://www.niams.nih.gov/Health_Info/Lupus/default.asp

There seems to be a lot going on with your sister and her care. If you would like to talk further, please email me at jrowshandel@lupusny.org.

 

Best wishes,

Jessica Rowshandel, MSW

 

 

any permanent solution for Lupus (SLE - Systemic Lupus Erythem

hello sir/mam

we are in india ,andhrapradesh,hyderabad. as my sister is suffering with Lupus (SLE - Systemic Lupus Erythematosus) and since 5 years we are using steriods (whysolene 15-20mg/day) these all days but even than sometimes it automatically increases and veryvery slowly come down not even to normal position, since 2 months she is facing hip joint pain she cant able to walk properly due to pain, but our consultant says that there is no such symptoms and though she is highly qualified and due to this problem she lost the job she handled tough situations but since 5 months am observing she is deprresed and now she is 29 unmarried is this happens in regular cases is there any hope for permanent cure for this cause can you guide me .

@Shirl- Hi. Wow, I'm sorry

@Shirl- Hi. Wow, I'm sorry that you have to travel so far but am glad that you are, at least, able to get the care you need.

Have you been in contact with any of the lupus chapters in Florida? They might be able to assist with local resources. There are some free/low cost clinics that I know of, but they are in New York City, where I am located.

If not here's the contact info for the FL chapters:

 

1. Lupus Support Network:- http://thelupussupportnetwork.org/

2. LFA, Southeast Florida Chapter- http://lupusfl.org/

3. Lupus Foundation of Florida- http://hstrial-lupusfoundati.intuitwebsites.com/

or lupusflorida.org

Best wishes!

Dear Kamlesh Agni I am sorry

Dear Kamlesh Agni
I am sorry to hear about your wife. I think the best thing to do is to go with her to her next rheumatology appointment if she allows that and let her rheumatologist know about the symptoms you are describing.
This article might also be helpful - at the bottom there is information on what to do if you think lupus is affecting the brain and has some helpful links:
http://www.lupusny.org/about-lupus/advice-column/dealing-with-lupus-fog
If you have other questions, please email me at jrowshandel@lupusny.org
Warmly,
Jessica

@Anonymous- I would be happy

@Anonymous-
I would be happy to talk with you further. Please call me at 212-685-4118, ext 32 or 1-800-74-LUPUS (58787).

brain problem with lupus

Hi jesica
my wife is 28 years old and suffering from lupus. Now she was physically fit but after every 2 hours she was excited and fight with family member without any reasons.and full day she is found in depression. So told me that how we care her or how we minimize her problem regarding brain.

medical bills

These medical bilis are really stressing me out putting me in poor house what realmente can i live without? Are there docs trying to help it make money stressed bout being burden

Insurance Coverage for non-US citizens

Hi Jessica

Do you know whether there is an insurance company that insures non-US residents with lupus? I live in the Bahamas but travel to Florida every three months to see my rheumy and this costs is out of pocket and is expensive.

I've researched this but come up empty handed.

Hopefully, you can answer this question.

Thanks in advance.

Shirl

Hi Rhonda, Thanks for your

Hi Rhonda,

Thanks for your post. It's probably a good idea for us to speak via phone. Would you mind giving me a call at 1-800-74-LUPUS (58787)? I'd be happy to speak with you more about these issues and see what I can do to help.

Warmly,
Jessica

symptoms

Hello,

I was only recently diagnosed with autoimmune disorder NOS in 2010 and had my third symptom for an official diagnosis of lupus this year, even though I have had some vague symptoms for about 3-4 years. Due to insurance and employment issues, I was unable to be screened for the cause of these issues. I have found one of my major symptoms is "lupus fog" as well as joint pain. I am having a difficult time with managing both. I am prescribed a low dose of Lortab, which does help but I have to take it regularly, and this contributes to the fog. Is there an alternative? I see my PCP regularly but cannot afford to see my rheumy on a regular basis. My PCP seems to be at a loss for both of these issues. Any help or suggestions would be appreciated.