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Beer to the Rescue

It’s Beer to the Rescue for People with Lupus


2015 Charity campaign brings award-winning brewers together to
raise funds for the Lupus Foundation of Southern California

SAN DIEGO, CALIF., January 12, 2015: Today marks the start of a year-long campaign during which more than 20 San Diego County craft brewing companies will produce beers to raise funds in support of Lupus research and awareness as part of the newly established Beer to the Rescue charity initiative. Founded and coordinated by San Diego-based beer journalist Brandon Hernández, the campaign will consist of more than two-dozen special events celebrating the release of individual beers brewed specifically so that a portion of proceeds from their sales can be donated to the Lupus Foundation of Southern California (LFSC).  The third event will be at Monkey Paw Pub and Brewery at 805 16th Street, San Diego, CA 92101  down by City College.  Lup’d Up single will be the beer of the evening.  Belgian-style table beer with rhubarb, Azacca and Nelsen Sauvin hops. Beginning at 5:00 p.m. on Thursday, February 26, 2015.  For more information Click Here

 

PredniSone????

Lower-than-Standard Dose of Prednisone

Lower-than-Standard Dose of Prednisone Found to be Just as Effective with Fewer Side Effects

A small study in Spain is raising hopes that Lupus Nephritis patients can be treated with a dosage of the corticosteroid Prednisone that is less than half the current standard and still be just as effective with few or no side effects.

Although Prednisone is a key drug in the treatment of lupus, the steroid often causes severe side effects from bone loss to cardiovascular disease. The Lupus Research Institute reports:

LN is typically treated with a combination of immunosuppressants and high-dose prednisone (50-60 mg a day). But the cost of remission over time at that dose is often bone loss, osteonecrosis, cataracts, and cardiovascular disease.

However, researchers at the BioCruces Health Research Institute in Spain report that half or even less than half that amount of prednisone produced complete or partial remission in a majority of patients in as quickly as six months, with few or no side effects.

The new regimen, which they call the "Cruces Protocol," consists of starting doses of 15-30 mg/day given with pulses of methyl-prednisolone, hydroxychloroquine, and cyclophosphamide, rapidly tapering the prednisone to a maintenance dose of 2.5-5 mg/day within 16 weeks, and maintaining azathioprine and/or mycophenolate mofetil for up to two years.

You may read more about the study here. While this study is a bright ray of hope, LFSC would like to remind readers that we provide these updates for information purposes only. If you would like to seek a change to your prescription regimen or dosage, please consult your rheumatologist or treating physician.


 

Free Support Groups

FREE Monthly Support Groups

Third Saturday of the Month at 10:30am

Saturday, February 21, 2015

Marie Callender’s – 6950 Alvarado Rd, San Diego, CA 92120

The Lupus Support Group meets monthly on the 3rd Saturday of the month to meet, talk, network, and share stories and information.

These are FREE and everyone is welcome – Lupus patients, family members, and friends.

{Click Here for More Info}

 

279 Patient Groups Applaud Proposed Changes to Essential Health Benefits

Coalition Endorses Additional Patient Protections and Urges Further Action against Discrimination

Washington, DC (December 19, 2014) – Today, the “I Am (Still) Essential” coalition of patient groups sent a letter signed by 279 organizations to Health and Human Services (HHS) Secretary Sylvia Mathews Burwell applauding the recently released Notice of Benefit and Payment Parameters for 2016 which, once finalized, define Essential Health Benefits (EHB) for Qualified Health Plans (QHPs) in the future under the Affordable Care Act (ACA). The letter detailed how the many positive changes in the proposed rule will improve the plans available to patients. The letter also suggests additional changes that will increase positive patient outcomes and urges the rule to be finalized without diminishing any of the proposed improvements.

“Despite its short tenure, the ACA has already increased patient access to care,” said Andrew Sperling, Director of Federal Legislative Advocacy at National Alliance on Mental Illness. “While it is not perfect, based on the proposed changes contained in the rule, we are optimistic the program will continue to evolve to serve patients better.”

The coalition, which is comprised of groups representing millions of patients throughout the country, has been working to shed light on discrimination and barriers-to-care that patients, specifically those with chronic conditions, have encountered under the plans offered within the Health Insurance Marketplace.

The latest notice from HHS directly addresses several access-to-care issues the coalition raised in a July letter to the department.  The patient groups applaud HHS for proposing new procedures that should result in plans covering more prescription medications to meet patient needs and avenues to access medications not covered by a plan through exceptions processes.  The proposed rule also increases transparency so that enrollees have access to more information regarding providers and prescription formularies.  The patient groups also support the HHS proposal that prohibits plans from delivering medications only through the mail.

“We are pleased that many of the concerns highlighted by the patient community are being recognized and addressed by Secretary Burwell,” said Angela Ostrom, Chief Operating Officer and Vice President of Public Policy at the Epilepsy Foundation. “We urge HHS to ensure all of these positive changes are incorporated into the final rule and to implement them in 2016 and not wait until 2017.  Patients should not wait another year for these modifications to occur; they need the ACA to work for them now.”

Despite ongoing improvements that are applauded by the group, the coalition urged further action from HHS on the matter of discrimination and high patient cost-sharing for medications. While the notice from HHS declares that placement of most or all drugs for a specific condition on the highest cost tier constitutes discrimination, the coalition urges HHS to begin to enforce this and address other discriminatory barriers to care such as high co-insurance. The letter from the coalition also requests further regulatory guidance on what constitutes discrimination in the marketplace.

“The changes proposed by HHS contained in the proposed rule should have an immense and positive impact on patients’ access to appropriate care,” said Carl Schmid, Deputy Executive Director of the AIDS Institute. “We encourage Secretary Burwell to implement these positive proposals in a final rule immediately and enforce the law to end discriminatory practices.”

Groups signing onto the letter include:  The AIDS Institute, American Autoimmune Related Diseases Association, Colon Cancer Alliance, Easter Seals, Epilepsy Foundation, Lupus Foundation of America, National Alliance on Mental Illness, National Kidney Foundation, National Multiple Sclerosis Society, and Parkinson’s Action Network.

The full text of the letter to HHS Secretary Burwell, along with the full list of signers, can be viewed here or go to: http://bit.ly/1JgdqhY.

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General Donation
Make a donation in any amount to help support education, research and advocacy. With a minimum donation of $35 you will become a member of the Foundation.

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In Honor
Shopping for someone that has everything, make a donation in their name and LFSC will send your special someone a card recognizing their special event.

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Volunteer Opportunities
There are many special ways to be a part of the Lupus Foundation. All of our volunteers are special and needed. If you would like to help.

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LFSC's 2011 Volunteer
Congratulations to Gerardo Becerra who received LFSC's 2011 Volunteer of the Year Award last night at CHAD's (Combined Health Agencies) Volunteer of the Year Award Ceremony at San Diego's Hall of Champions.

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Bracelet
Orange Bracelet: "LIFE WITHOUT LUPUS" $2.00

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T-shirt
Purple T-shirt with multicolored butterfly that says: “Someone you know has Lupus.” $20.00

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Membership

If you are interested in membership with the Lupus Foundation of Southern California, please fill out the attached application and e-mail it to This e-mail address is being protected from spambots. You need JavaScript enabled to view it This e-mail address is being protected from spambots. You need JavaScript enabled to view it. or fax to (858) 278-2782.

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Support Groups

The Lupus Foundation offers several support groups around San Diego County and we are working on opening new groups in more areas.

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Supporters

We are very proud to have served our sun concerned customers since 1997. Our goal is to offer you quality sun protection products with exceptional customer service and caring for your personal sun protection needs.

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