Lipoedema UK 2021 Survey – Living With Lipoedema- Liposuction and Other Treatments
For more information on our latest survey and Lipoedema UK’s response to Nice Interventional Procedures Guidance : non – cosmetic liposuction in the treatment of chronic lipoedema. IP1843
Lipoedema UK are disappointed that NICE are not yet in a position to fully recommend the provision of liposuction for lipoedema by the NHS, especially as we have been heartened by the recognition that the committee gave to the impact that lipoedema has on peoples’ quality of life. Our thanks go to all our members and those who responded to our survey with their stories, which enabled us to help the NICE committee understand the need for better treatment options than the current highly limited provision. Those personal stories led them to conclude that lipoedema is still under-recognised and can be “extremely debilitating”.
Non-cosmetic liposuction (NCL) for Lipoedema
The UK Best Practice Guidelines for the Management of Lipoedema advise that surgical options may be appropriate for some patients with Lipoedema.
Liposuction for patients with lipoedema has been found to reduce tissue bulk, pain, bruising, improve mobility, functioning and quality of life (Reich-Schupke et al 2012; Peled & Kappos, 2016).
There is also evidence of longer term benefits of liposuction surgery. In a study of 112 patients who had undergone tumescent liposuction between 5 and 11 years previously, positive changes over time were found in seven parameters. These include pain, bruising, oedema (swelling), mobility and quality of life and contributed to an overall improvement (Schmeller et al, 2012; Baumgartner et al; 2016).
There are a growing number of personal testimonials and studies that show that many patients experience enormous benefits and improved quality of life from non-cosmetic liposuction for lipoedema.
Lipoedema UK’s May 2021 Survey ‘Living With Lipoedema- Liposuction and Other Treatments’ was completed by 933 women with lipoedema. The survey asked 104 questions focusing on diagnosis and services provision, symptoms and impact on quality of life, motivation, pre-and post-liposuction experiences, treatment effectiveness and outcomes of non-cosmetic liposuction. There were two main ‘pathways’ within the survey, depending on whether the respondent had undergone NCL or not.
Data from Lipoedema UK’s 2021 survey was used to compile Lipoedema UK’s response to the NICE ongoing review of Non Cosmetic Liposuction and our Chair Sharie Fetzer and Patron Dr Kristiana Gordon, sat as experts in the “Interventional Procedures Advisory Committee” meeting held on 12th August 2021. NICE are now reviewing all the evidence presented to them and will make a final decision in January 2022.
More information on the NICE procedure here.
The British Association of Plastic Reconstructive and Aesthetic Surgeons have published their own Summary document on liposuction safety & recommendations. The joint BAAPS/BAPRAS expert liposuction group’s document serves to critically review the evidence in the literature, as well as explain the differences between the lipoedema population compared to the aesthetic surgery population undergoing liposuction as two distinct patient groups with widely differing risk and complications profiles. It also reviews the various contemporary approaches to liposuction and associated risks in the aesthetic population.
A newly published article July 2021, by Rachel Pugh on Medscape, ‘Experts call for Liposuction approval for Lipoedema’ summarises the situation in the UK and can be found here.
A recent report by German surgeons; Mojtaba Ghods, Iakovos Georgiou, Jeremias Schmidt and Philipp Kruppa on ‘Disease progression and comorbidities in lipedema patients: A 10 year retrospective analysis’ shows long term results from their patients .
Please click on each report to see full report.
Other reports include:
Liposuction procedures are not without risk in the immediate post-operative period and may cause long-term complications (Stutz & Krahl, 2009; Rappich et al 2015),
Patients considering liposuction should research a surgeon’s experience and the facilities of clinics carefully to ensure they provide adequate standards of care and to establish that the procedures offered are appropriate for their individual needs.
Patients are recommend to undertake non surgical (conservative) treatment for at least six months before surgery including compression garments as recommended by their surgeon. Age, condition of skin and tissues will impact on results, as too will any post weight gain. Post operative pain and swelling is inevitable – and may take several months to resolve. Some patients may need life-long compression garments to maintain results and Lipoedema will still remain a long-term condition requiring careful lifestyle management.
Expanding Medical Insurance Cover for Liposuction in the US
Cigna expands liposuction coverage under ERISA class settlement.
Cigna Health & Life Insurance Co. expanded its coverage of specialised liposuction and will reprocess coverage requests from patients with Lipoedema whose claims were previously denied, according to a class settlement filed in the Northern District of California.
The settlement, which is expected to benefit more than 239 people, was reached after Cigna opted to change its policy on Liposuction coverage in the wake of Banafsheh Akhlaghi’s lawsuit raising claims under the Employee Retirement Income Security Act. Cigna’s “post-litigation reversal,” in which is now finds that liposuction is a medically necessary treatment for Lipoedema if certain criteria are met.
UnitedHealthcare Settles Liposuction Coverage Battle
UnitedHealthcare struck a deal to end a class action lawsuit accusing the health care giant of violating benefits law by refusing to cover liposuction treatment, promising to reimburse policyholders and change its coverage policy.
In a motion for preliminary approval filed in California federal court, UnitedHealthcare Inc. and class representative Mary Caldwell urged U.S. District Judge William Alsup to sign off on the deal, saying it would limit the risks and expenses of a prolonged litigation.
“The parties agree that it is in their best interest, and in the interest of the court, to conserve resources and avoid the unnecessary commitment of time and expense related to the upcoming events in the case,” the motion stated.
Caldwell filed the suit in 2019 after United refused to cover her liposuction
procedure that her doctor considered a necessary treatment for her lipedema, a chronic condition that causes fat tissues to build up in the lower body. Her suit scored class certification in December 2020.
United denied coverage for the procedure, saying it had not proved to be helpful to treat her condition, Caldwell said. The health insurer ignored medical evidence about liposuction’s benefits and violated the Employee Retirement Income Security Act by refusing to cover it, she claimed.
The deal calls on United to put into effect a new medical policy for liposuction to treat lipedema. The new policy will consider liposuction “reconstructive and medically necessary” to treat lipedema when certain criteria are met, according to court documents.
After reviewing pre-service requests and post-services claims under the new policy, United will also provide coverage for the class members who still have coverage under the insurer.
United will also reimburse class members who no longer receive coverage who paid out- of-pocket expenses for liposuction, subject to certain caps.
As part of the deal, United also agreed to pay up to $875,000 for attorney fees and costs, court documents show.
NHS Funding For Liposuction
For more information visit the NHS Website.
Lipoedema UK Focus Group Reports
Women in Dire Need
Lipoedema UK’s series of four focus group reports “Women In Dire Need” reveal many of the the significant and debilitating impacts faced by women living with Lipoedema.
Key findings are:
- Lipoedema is an invisible, unrecognised condition
- Discrimination and judgement are as debilitating as physical symptoms
- Poor mobility and financial health blight lives
- Patients suffer poor mental health, including poor body image, self-esteem and self-confidence
- Compression garments can improve quality of life but patients struggle to get the right prescription
- Surgery can improve quality of life and pain and have positive mental impacts, but is not without its challenges
Find out more here.
Please click on each report to see full report.
Lipoedema UK’s 2019 Survey – Compression Garments and Liposuction as Treatments to Manage Lipoedema
Lipoedema UK’s 2019 survey highlights how, despite increasing evidence that non-cosmetic liposuction can drastically improve mobility and pain enabling women to enjoy a far higher quality of life and increased self-confidence, women with lipoedema are still denied NHS treatment and private health care insurance.
Our survey reveals the desperate financial measures that many UK women are willing to take to obtain surgery and freedom from the symptoms of lipoedema.
The top row of photos above are of a 30 year old UK patient pre-surgery, diagnosed by a leading UK consultant and told that her condition would deteriorate to the point that she would need to use a wheelchair within 15 years. Despite being an ideal candidate for NHS surgery, NHS funding was denied. The bottom row of photos were taken 12 months later aged 31, after her family personally raised the £15,000 needed for 3 surgeries in Germany. She no longer needs pain medication and enjoys a dramatically improved quality of live with compression garments, as her only NHS support.
To download the full Lipoedema UK’s 2019 survey report click here.