California to Expand Innovative Adult Sickle Cell Disease Clinics Statewide

Governor and legislature commit $15 million in funding to historically underserved Californians

California advanced care for people with sickle cell disease (SCD) by launching a new initiative to establish a network of clinics for adults with SCD statewide, expanding services for those impacted by this chronic, debilitating disease.

The launch marks the grand opening of a new clinic site at the MLK Jr. Outpatient Center in Los Angeles. The Los Angeles County Board of Supervisors named the new clinic after Jeffrey Smith, the son of Gil Smith, Founding Mayor of the City of Carson, who died from SCD complications in 1982 at the age of 23.  These milestones come three years after the Los Angeles County Department of Health Services first opened the adult SCD clinic at MLK Jr. Outpatient Center in Los Angeles, with its partners the Sickle Cell Disease Foundation (SCDF) and the Center for Inherited Blood Disorders (CIBD).

Now with a commitment of $15 million, Californians across the state with SCD will finally receive the quality health care they deserve.

"We have waited too long to address the poor health outcomes and premature deaths suffered by individuals with Sickle Cell Disease in California," said Diane Nugent, MD, president and medical director of the Center for Inherited Blood Disorders. "In the United States, life expectancy for individuals with Sickle Cell Disease is 61 years. In the United Kingdom, it's 70 years. In the state of California, it's a shocking 43 years. The program made possible by this funding due to the leadership of Assemblymember Gipson will give new hope to and extend the lives of our vulnerable and underserved Californians who suffer from this terrible disease."

For the first time in California's history, the governor committed $15 million statewide for sickle cell adult treatment programs statewide. In addition, this program will help train clinicians to quickly recognize and properly treat the many complications faced by adults with this complex and debilitating disorder so they can receive the best care possible. Decades of inadequate funding for California adults living with SCD resulted in this underserved community dying at younger ages and at higher rates. Californians with SCD have higher incidents of emergency room visits and hospitalizations than patients in other states. This program marks the first time California has provided significant funding for SCD, which is the world's most common genetic disease affecting approximately 100,000 in the U.S. alone.

"Given that Jeffrey's story was the impetus that drove me to introduce this budget proposal, it is fitting that the first of the clinics be named in his honor," said Assemblymember Mike Gipson. "Today, the majority of adults with SCD are forced to obtain care in hospital emergency departments and other non-SCD specialty settings. The Jeffrey Smith Sickle Cell Adult Center will be a center of excellence that understands adult patient's unique needs and provide them with a quality of life that we would all want for ourselves. Moreover, the comprehensive outpatient center will avoid increased hospitalization costs for a Medi-Cal population."

The new funding will help create a statewide network of regional adult SCD clinics modeled after the MLK Jr clinic. Developed within the existing health system infrastructures, the network will serve counties where the largest numbers of adults with SCD live, including Los Angeles; San Bernardino and Riverside; Alameda, Contra Costa and San Francisco; Sacramento and Solano; Kern; Fresno and Madera; and San Diego.

"Sickle cell disease is a complex condition that affects both the physical and mental health of patients, and it is critical that we provide them with first-rate care in the community," Supervisor Mark Ridley-Thomas said. "Since 2016, LA County's Department of Health Services and the Sickle Cell Disease Foundation have helped adults with sickle cell disease at the Martin Luther King Jr. Outpatient Center in Willowbrook. I'm thrilled to see this model expanded across the state."

The budget allocation will help fund clinical workforce development to strengthen doctors' and nurses' understanding of current care guidelines, expand outreach and education, and increase tracking to better monitor care and outcomes through a partnership with the Sickle Cell Data Collection Program. This funding will improve the following outcomes:

  • African-Americans and Hispanic-Americans are disproportionately impacted, especially in the Los Angeles area where close to 2,000 patients live with SCD.
  • The average life expectancy for people with the most severe form of SCD is 30 years shorter than that of people withough SCD.
  • Patients with SCD have the highest rate of returning to the hospital within 30 days of being discharged compared to other health conditions.
  • The rate of stroke in adults (age 35-64 years) with SCD is three times higher than rates in African Americans of similar age without SCD.
  • The number of physicians trained and willing to treat SCD patients, especially adult patients, is severely limited.

"We are very grateful for this critical funding that will finally help ensure that Californians with Sickle Cell Disease can access the level of medical expertise needed to address the symptoms of their disease so they can live longer, more fulfilling and productive lives," said Mary Brown, president and CEO of the Sickle Cell Disease Foundation of California.

About the Center for Inherited Blood Disorders
Center For Inherited Blood Disorders (CIBD) has cared for hundreds of children and adults in Southern California, offering a safety net clinic that provides health care services specifically to patients with inherited blood disorders.  CIBD has been able to increase access to care for those who are economically challenged by providing medical care regardless of ability to pay.

About the Sickle Cell Disease Foundation of California
The mission of the Sickle Cell Disease Foundation of California (SCDF) is to provide life-enhancing education, services and programs for individuals living with sickle cell disease. SCDF broadens public awareness, delivers effective advocacy initiatives and promotes innovative therapies to ultimately find a cure.

About the MLK Jr. Outpatient Center
Serving as a model for accessible, culturally-sensitive healthcare, the Los Angeles County Department of Health Services' Martin Luther King, Jr. Outpatient Center operates over 70 primary care and specialty care clinics to serve the health care needs of surrounding communities. The state-of-the-art facility is part of a revitalized medical campus which includes a 131-bed community hospital, psychiatric urgent care, recuperative care center, and Center for Public Health.


Why Don't You Take Your Holidays?

By Susan Leigh

I'm sure many of us will remember the culture of working long hours, always keen to be recognized as the first to arrive and the last one to leave each day. It didn't matter if the hours in-between were spent roaming offices clutching a file under one arm, looking busy. We were there!

These days, with so many of us hot-desking, working from home or on the road travelling from meeting to meeting there's no time to 'look busy' as we've often very little time to waste. In fact a recent TUC survey (2019) revealed that £32 billion of unpaid overtime was worked last year.

No wonder stress is such a 'biggie', costing UK businesses £40 billion in lost productivity, due to absenteeism, accidents and poor performance. Taking breaks and holidays is important in managing stress, self-care and wellbeing. Why is it then that 2 million workers, or one in fourteen, fail to use their full holiday entitlement?

Is there more pressure around? We all want to do a good job, protect our employment and see the business do well. With appraisals and performance reviews likely to affect our salaries and progression there can be additional concern to always be available and not open the door for someone else to cover our role, do a better job or maybe discover mistakes or inefficiencies.

When time away from work is so important why don't you take your holidays?

- Fear of missing out and perfectionism can mean that we feel stressed or apprehensive and uncomfortable at the mere thought of taking a break or holiday. We may really need time off but feel conflicted at the prospect of being unavailable for the duration.

- It's often the case that when we're constantly busy we focus our attention on dealing with the most pressing matters first. Why wouldn't we? But gradually the less demanding areas of our lives can fade into the background, with us trusting family and friends to take care of themselves. However, if we're frequently unavailable they can start to feel unimportant and learn to get along quite nicely without us.

- It's interesting that post-holiday is the second busiest time for divorce lawyers, with post-Christmas being the most busy. When we lose touch with our relationships we can find that spending a couple of weeks together highlights how estranged we've become. Taking regular breaks and holidays provides an opportunity to keep communications alive and improve those relationships, so avoiding becoming too distant.

- Be aware that stress manifests itself in different ways. There are a documented 360 physical symptoms of stress, potentially a new one for each day of the year! Learning to recognize your own warning signs gives you advance notice that it's time to intervene and take a holiday before things escalate and affect your health and wellbeing.

- One sign that you'd benefit from a holiday is when your creative thinking becomes less effective. You may find yourself going through the motions, working hard but not caring as much or concentrating as well, so losing the joy in what you're doing.

So, change your perspective on holidays;

- Decide how you'd like to spend a week or two, what you'd like to do whilst away. Whether single or partnered, with or without children it's important to include your wishes. Consider your needs as well as other peoples in any decision-making and stop being so preoccupied with what you'd be missing at work.

- Avoid using your holidays to catch up on chores. If you're not going away it can be tempting to decorate the house or sort out the garden. There may be some merit in allocating time for those things but equally find a location, hobby or interest that appeals; maybe a group holiday, one for special interests like walking, or even a retreat. Investigate what excites or inspires you.

- Use your holiday as time to really focus on yourself and/or family. Do things together that you enjoy and recommit to your relationships. Remind yourself that they're often the reason why you work so hard. Your intention was to make a good life and provide for them. Discuss ways to maintain fun and closeness post-holiday. Maybe sharing regular family meals, hobbies and interests could sustain 'us' time once the holiday is over.

- Appreciate that breaks and holidays should give space to switch off and distance ourselves from routine cares and stress. Often a break provides time to be quieter, distracted by other things, afterwards returning refreshed, with new insights and ways of doing things, perhaps even with a new perspective on a problem.

- Learn to switch off the adrenalin. We can become habituated to living permanently on red-alert, hyper-vigilant and programmed to constantly react and jump to attention at whatever is happening. Adopting a calmer, more relaxed approach helps you assess and choose to respond in a more pragmatic, effective way.

Switching off with breaks and holidays is an important way to invest in your ability to live life well. So make sure you take your holidays.

Susan Leigh, counsellor, hypnotherapist, relationship counsellor, writer & media contributor offers help with relationship issues, stress management, assertiveness and confidence. She works with individual clients, couples and provides corporate workshops and support.

She's author of 3 books, 'Dealing with Stress, Managing its Impact', '101 Days of Inspiration #tipoftheday' and 'Dealing with Death, Coping with the Pain', all on Amazon & with easy to read sections, tips and ideas to help you feel more positive about your life.

BOOKS 2019