Printed by Eleven years have passed since the first report of lipodystrophy at an HIV conference....
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printed by www.postersession.com Eleven years have passed since the first report of lipodystrophy at an HIV conference. The excitement and hope for a longer life that accompanied the arrival of Highly Active Anti-Retroviral Therapy (HAART) was then tempered by accounts of humps, bellies, and facial wasting. A decade on, many unanswered questions and misconceptions about HIV associated lipodystrophy persist with only a limited number of treatment options available. Frustrated while waiting for answers, many people living with lipodystrophy have turned to the internet for advice, treatment and support in hopes of reversing some of the devastating effects of this stigmatizing syndrome that decreases their self image, mental health, quality of life, and the possibility to re-enter the work force. Most approved interventions for lipodystrophy are perceived as purely cosmetic and have a very low probability of reimbursement. Therefore, it is extremely important that more data are generated from patients to enable advocacy for policy change in third party reimbursement guidelines for HIV-associated body changes. This is the first large online survey patients in the field. As of October 2008, a total of 1011 people had participated, with a majority being white males over 40 years old, with over 10 years since HIV diagnosis, on HAART for over 5 years, and with prior exposure to stavudine and AZT. 90% self reported body changes including facial lipoatrophy (78%), buttock wasting (71.3 %), venomegaly in extremities (68%), abdominal fat (62.4 %), and wasting syndrome (44%.) Due to body changes, past or current depression or anxiety was present in 87% of survey responders and 25% had suicidal thoughts in the past. 41% had interrupted HAART due to body changes in the past. Over 50% of survey responders stopped socializing and dating, decreased sexual activity, had decreased self-image, stopped looking at themselves in the mirror, and changed clothing style. The most popular therapeutic interventions used were exercise and nutritional changes, followed by facial fillers, supplements and testosterone. Most used own funds to pay for therapies. 40% have done nothing about their facial lipoatrophy, 30% used polylactic acid, and 32% have switched from stavudine to tenofovir or abacavir. 70% had high lipids and 29% had high glucose in the past. Most participants perceived that HIV medications caused their body changes. 505 participants posted suggestions to guide further research (available upon request.) details can be found at : facialwasting.org/surveys.lists A link to a survey with 23 multiple-choice and open ended questions was posted in pozhealth asking people to share information about demographics, time since diagnosis, HIV medication and thymidine analog exposure, perceived body changes , incidence of depression/anxiety, suicidal thoughts, medication interruptions, social interaction, self-image, therapeutic interventions and their cost coverage, use of lipoatrophy-related products, incidence of lipid and glucose abnormalities, perceptions on the role that HIV medications play on body changes, and community input for lipodystrophy researchers. The survey was publicized for 9 months in 2007-2008 with the volunteer help of TheBody.com and other online venues. It is a work-in-progress with more people parcipating as time progresses. To collect data on the impact of HIV-related lipodystrophy and its management on quality of life of HIV-positive members of pozhealth at yahoogroups.com, a 6-year listserve with close to 3000 members BACKGROUND OBJECTIVE METHODS RESULTS CONCLUSIONS Despite the inherent limitations and possible biases of self selection and the limited survey population, body changes appear to take a major toll in patients' quality of life. The majority of patients in this sample reported eroding self-image, increased isolation, and depression/anxiety and most associate these with drugs used in the treatment of HIV disease. Disturbingly, 25% of participants had suicidal thoughts in the past due to body changes. The patients' belief that there is an association with the treatment drugs they use may have a negative effect on patient adherence to prescribed regimens. We suggest that more information is obtained from other patient populations via targeted outreach venues. More data on the impact of lipodystrophy on quality of life are essential in justifying federal, estate, and foundation funding for exercise, nutritional, and wellness programs and to improve the current low rate of third-party reimbursement of therapies to manage body changes in HIV disease. Have you taken any of these medications in the past? Answer Options Response Percent Response Count Zerit (D4T) 83.3% 747 AZT 80.2% 719 Crixivan 51.2% 459 High dose Norvir 36.7% 329 Hydroxyurea 12.6% 113 DDI (videx) 54.6% 490 DDC (Hivid) 30.0% 269 Have you had body shape changes after starting HIV medications in the past? Answer Options Response Percent Response Count Yes 89.2% 902 No 10.8% 109 What kind of body changes are you experiencing or have you experienced? Answer Options Response Percent Response Count Involuntary weight loss/wasting 44.0% 432 Abdominal (Belly) Fat Gain 62.4% 612 Facial Wasting 77.8% 763 Butt Wasting 71.3% 699 Veiny Legs or Arms 67.9% 666 Increased Breast Size 22.1% 217 Buffalo Hump (Behind The Neck) 21.7% 213 Increased Neck Size 16.5% 162 Parotid Gland Enlargement (sides of face) 16.2% 159 Other 6.7% 66 If other, Have you experienced depression or anxiety due to the body changes? Answer Options Response Percent Response Count Yes 87.3% 883 No 12.7% 128 Have you ever thought of killing yourself due to your body changes? Answer Options Response Percent Response Count Yes 25.2% 255 No 74.8% 756 Have you ever thought about not taking your HIV medications or have you ever stopped taking them because of fear of worsening your body changes? Answer Options Response Percent Response Count Yes 41.5% 420 No 58.5% 591 Have the body changes cause you to: (check all that apply) Answer Options Response Percent Response Count Stop socializing and going out to meet people 65.3% 620 Stop dating 51.2% 486 Decrease sexual activity 73.4% 697 Increase sexual activity 3.5% 33 Worry too much about people finding out you are HIV+ 59.9% 569 Be rejected by potential sexual partners 56.1% 533 Affect your job performance 26.2% 249 Stop looking at yourself in the mirror 56.7% 539 Change your clothing style 57.1% 542 Abuse drugs or alcohol to feel better 16.8% 160 Deplete your finances in search of a solution 28.7% 273 What have you done to try to reverse your body changes? (check all that apply) Answer Options Response Percent Response Count Exercised more 73.2% 698 Watch what I eat 73.9% 704 Got my face injected with a filler or cosmetic product 40.8% 389 Got my parotid glands treated with radiation 1.6% 15 Took supplements that I heard may help my body fat/muscle 44.3% 422 Used testosterone 46.4% 442 Used human growth hormone 16.9% 161 Used nandrolone (Deca durabolin) 17.0% 162 Used Oxandrin 15.0% 143 Got liposuction 7.1% 68 Got butt implants 2.0% 19 Use padded underwear 13.5% 129 Other 6.6% 63 If other, Impact of body changes on the quality of life of HIV-positive treatment experienced patients An online community-based survey Nelson Vergel [email protected] Program for Wellness Restoration (PoWeR)- Houston, Texas Powerusa.org How old are you? Answer Options Response Percent Response Count Under 15 years old 0.1% 1 15-20 0.1% 1 20-25 0.6% 6 25-30 1.8% 18 30-35 4.6% 46 35-40 8.7% 87 40-45 22.8% 229 45-50 22.8% 229 50-55 20.1% 202 55-60 11.8% 119 Over 60 6.7% 67 What is your ethinicity? Answer Options Response Percent Response Count White 78.6% 790 Black 7.0% 70 Latino 9.4% 94 Asian 1.6% 16 American Indian 1.0% 10 Other 2.5% 25 What is your gender? Answer Options Response Percent Response Count Female 12.1% 122 Male 87.6% 880 Transgender 0.3% 3 How long have you known that you are HIV positive? Answer Options Response Percent Response Count Under 5 years 9.8% 98 5- 10 years 14.0% 141 10-15 years 21.2% 213 15-20 years 28.7% 288 over 20 years 26.4% 265 Are you currently taking HIV medications? Answer Options Response Percent Response Count Yes 94.9% 954 No 5.1% 51 If you are taking or have taken medications for HIV, how long have you taken them (total years)? Answer Options Response Percent Response Count Under 5 years 14.9% 145 5-10 years 22.0% 215 10-15 years 36.9% 360 15-20 years 26.2% 256 Have your insurance, ADAP/Ryan White clinic, HMO, health care system (for countries outside the US) and/or supplier patient assistance program paid for ANY of the solution(s) mentioned in the answer(s) in the previous question? (Check all that apply) Answer Options Response Percent Response Count No one has. I had to pay with my own money 62.2% 534 Yes, my insurance company has 18.6% 160 Yes, my HMO has 5.5% 47 Yes, my ADAP/Ryan White program has 7.2% 62 Yes, my country's health system has 7.5% 64 Yes, a supplier's patient assistance program has 11.5% 99 Have you had facial wasting (lipoatrophy)? Answer Options Response Percent Response Count Yes 78.2% 790 No 21.8% 220 What option have you used to improve your facial lipoatrophy? Answer Options Response Percent Response Count I have done nothing 39.6% 337 I have used BioAlcamid 8.1% 69 I have used silicone 7.2% 61 I have used Sculptra (New Fill or polylactic acid) 30.8% 262 I have used Radiesse 4.6% 39 I have used PMMA in Rio, Tijuana or other 4.8% 41 I have switched off from Zerit to Viread, Ziagen, Epzicom or Truvada 32.2% 274 I have switched off from AZT to Viread, Ziagen, Epzicom, or Truvada 12.1% 103 I have taken Uridine (Nucleomaxx) 1.3% 11 Other 8.0% 68 Do you have or have you had high cholesterol/triglycerides? Answer Options Response Percent Response Count Yes 68.4% 675 No 26.1% 258 I do not know 5.5% 54 Do you think some HIV medications can increase belly fat? Answer Options Response Percent Response Count Yes 83.7% 825 No 0.8% 8 Not sure 13.5% 133 I think HIV causes it, not the medications 2.0% 20 Do you think some HIV medications can increase fat loss under the skin (facial wasting, veiny legs/arms, fat loss in the butt)? Answer Options Response Percent Response Count Yes 88.6% 874 No 0.9% 9 Not sure 7.1% 70 I think HIV causes it, not the medications 3.3% 33
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Transcript of Printed by Eleven years have passed since the first report of lipodystrophy at an HIV conference....
printed by
www.postersession.com
Eleven years have passed since the first report of lipodystrophy at an HIV conference. The excitement and hope for a longer life that accompanied the arrival of Highly Active Anti-Retroviral Therapy (HAART) was then tempered by accounts of humps, bellies, and facial wasting. A decade on, many unanswered questions and misconceptions about HIV associated lipodystrophy persist with only a limited number of treatment options available. Frustrated while waiting for answers, many people living with lipodystrophy have turned to the internet for advice, treatment and support in hopes of reversing some of the devastating effects of this stigmatizing syndrome that decreases their self image, mental health, quality of life, and the possibility to re-enter the work force. Most approved interventions for lipodystrophy are perceived as purely cosmetic and have a very low probability of reimbursement. Therefore, it is extremely important that more data are generated from patients to enable advocacy for policy change in third party reimbursement guidelines for HIV-associated body changes. This is the first large online survey of its kind that attempts at determining lipodystrophy-related issues affecting patients in the field.
As of October 2008, a total of 1011 people had participated, with a majority being white males over 40 years old, with over 10 years since HIV diagnosis, on HAART for over 5 years, and with prior exposure to stavudine and AZT. 90% self reported body changes including facial lipoatrophy (78%), buttock wasting (71.3 %), venomegaly in extremities (68%), abdominal fat (62.4 %), and wasting syndrome (44%.) Due to body changes, past or current depression or anxiety was present in 87% of survey responders and 25% had suicidal thoughts in the past. 41% had interrupted HAART due to body changes in the past. Over 50% of survey responders stopped socializing and dating, decreased sexual activity, had decreased self-image, stopped looking at themselves in the mirror, and changed clothing style. The most popular therapeutic interventions used were exercise and nutritional changes, followed by facial fillers, supplements and testosterone. Most used own funds to pay for therapies. 40% have done nothing about their facial lipoatrophy, 30% used polylactic acid, and 32% have switched from stavudine to tenofovir or abacavir. 70% had high lipids and 29% had high glucose in the past. Most participants perceived that HIV medications caused their body changes. 505 participants posted suggestions to guide further research (available upon request.) More results and details can be found at : facialwasting.org/surveys.lists
A link to a survey with 23 multiple-choice and open ended questions was posted in pozhealth asking people to share information about demographics, time since diagnosis, HIV medication and thymidine analog exposure, perceived body changes , incidence of depression/anxiety, suicidal thoughts, medication interruptions, social interaction, self-image, therapeutic interventions and their cost coverage, use of lipoatrophy-related products, incidence of lipid and glucose abnormalities, perceptions on the role that HIV medications play on body changes, and community input for lipodystrophy researchers. The survey was publicized for 9 months in 2007-2008 with the volunteer help of TheBody.com and other online venues. It is a work-in-progress with more people parcipating as time progresses.
To collect data on the impact of HIV-related lipodystrophy and its management on quality of life of HIV-positive members of pozhealth at yahoogroups.com, a 6-year listserve with close to 3000 members
BACKGROUND
OBJECTIVE
METHODS
RESULTS
CONCLUSIONS
Despite the inherent limitations and possible biases of self selection and the limited survey population, body changes appear to take a major toll in patients' quality of life. The majority of patients in this sample reported eroding self-image, increased isolation, and depression/anxiety and most associate these with drugs used in the treatment of HIV disease. Disturbingly, 25% of participants had suicidal thoughts in the past due to body changes. The patients' belief that there is an association with the treatment drugs they use may have a negative effect on patient adherence to prescribed regimens.
We suggest that more information is obtained from other patient populations via targeted outreach venues. More data on the impact of lipodystrophy on quality of life are essential in justifying federal, estate, and foundation funding for exercise, nutritional, and wellness programs and to improve the current low rate of third-party reimbursement of therapies to manage body changes in HIV disease.
Have you taken any of these medications in the past?
Answer OptionsResponse Percent
Response Count
Zerit (D4T) 83.3% 747AZT 80.2% 719Crixivan 51.2% 459High dose Norvir 36.7% 329Hydroxyurea 12.6% 113DDI (videx) 54.6% 490DDC (Hivid) 30.0% 269Have you had body shape changes after starting HIV medications in
the past?
Answer OptionsResponse Percent
Response Count
Yes 89.2% 902No 10.8% 109
What kind of body changes are you experiencing or have you experienced?
Answer OptionsResponse Percent
Response Count
Involuntary weight loss/wasting 44.0% 432Abdominal (Belly) Fat Gain 62.4% 612Facial Wasting 77.8% 763Butt Wasting 71.3% 699Veiny Legs or Arms 67.9% 666Increased Breast Size 22.1% 217Buffalo Hump (Behind The Neck) 21.7% 213Increased Neck Size 16.5% 162Parotid Gland Enlargement (sides of face) 16.2% 159Other 6.7% 66
If other, please specify
86
Have you experienced depression or anxiety due to the body changes?
Answer OptionsResponse Percent
Response Count
Yes 87.3% 883No 12.7% 128
Have you ever thought of killing yourself due to your body changes?
Answer OptionsResponse Percent
Response Count
Yes 25.2% 255No 74.8% 756
Have you ever thought about not taking your HIV medications or have you ever stopped taking them because of fear of worsening your body changes?
Answer OptionsResponse Percent
Response Count
Yes 41.5% 420No 58.5% 591
Have the body changes cause you to: (check all that apply)
Answer OptionsResponse Percent
Response Count
Stop socializing and going out to meet people 65.3% 620Stop dating 51.2% 486Decrease sexual activity 73.4% 697Increase sexual activity 3.5% 33Worry too much about people finding out you are HIV+
59.9% 569
Be rejected by potential sexual partners 56.1% 533Affect your job performance 26.2% 249Stop looking at yourself in the mirror 56.7% 539Change your clothing style 57.1% 542Abuse drugs or alcohol to feel better 16.8% 160Deplete your finances in search of a solution 28.7% 273Other 7.1% 67
What have you done to try to reverse your body changes? (check all that apply)
Answer OptionsResponse Percent
Response Count
Exercised more 73.2% 698Watch what I eat 73.9% 704Got my face injected with a filler or cosmetic product
40.8% 389
Got my parotid glands treated with radiation 1.6% 15Took supplements that I heard may help my body fat/muscle
44.3% 422
Used testosterone 46.4% 442Used human growth hormone 16.9% 161Used nandrolone (Deca durabolin) 17.0% 162Used Oxandrin 15.0% 143Got liposuction 7.1% 68Got butt implants 2.0% 19Use padded underwear 13.5% 129Other 6.6% 63
If other, please specify
89
Impact of body changes on the quality of life of HIV-positive treatment experienced patients An online community-based survey
Nelson [email protected]
Program for Wellness Restoration (PoWeR)- Houston, TexasPowerusa.org
How old are you?
Answer OptionsResponse Percent
Response Count
Under 15 years old 0.1% 115-20 0.1% 120-25 0.6% 625-30 1.8% 1830-35 4.6% 4635-40 8.7% 8740-45 22.8% 22945-50 22.8% 22950-55 20.1% 20255-60 11.8% 119Over 60 6.7% 67
What is your ethinicity?
Answer OptionsResponse Percent
Response Count
White 78.6% 790Black 7.0% 70Latino 9.4% 94Asian 1.6% 16American Indian 1.0% 10Other 2.5% 25
What is your gender?
Answer OptionsResponse Percent Response Count
Female 12.1% 122Male 87.6% 880Transgender 0.3% 3
How long have you known that you are HIV positive?
Answer OptionsResponse Percent
Response Count
Under 5 years 9.8% 985- 10 years 14.0% 14110-15 years 21.2% 21315-20 years 28.7% 288over 20 years 26.4% 265
Are you currently taking HIV medications?
Answer OptionsResponse Percent
Response Count
Yes 94.9% 954No 5.1% 51
If you are taking or have taken medications for HIV, how long have you taken them (total years)?
Answer OptionsResponse Percent
Response Count
Under 5 years 14.9% 1455-10 years 22.0% 21510-15 years 36.9% 36015-20 years 26.2% 256
Have your insurance, ADAP/Ryan White clinic, HMO, health care system (for countries outside the US) and/or supplier patient assistance program paid for ANY of the solution(s) mentioned in the answer(s) in the previous question? (Check all that apply)
Answer OptionsResponse Percent
Response Count
No one has. I had to pay with my own money 62.2% 534Yes, my insurance company has 18.6% 160Yes, my HMO has 5.5% 47Yes, my ADAP/Ryan White program has 7.2% 62Yes, my country's health system has 7.5% 64Yes, a supplier's patient assistance program has 11.5% 99
Have you had facial wasting (lipoatrophy)?
Answer OptionsResponse Percent
Response Count
Yes 78.2% 790No 21.8% 220
What option have you used to improve your facial lipoatrophy? (check all that apply)
Answer OptionsResponse Percent
Response Count
I have done nothing 39.6% 337I have used BioAlcamid 8.1% 69I have used silicone 7.2% 61I have used Sculptra (New Fill or polylactic acid) 30.8% 262I have used Radiesse 4.6% 39I have used PMMA in Rio, Tijuana or other 4.8% 41I have switched off from Zerit to Viread, Ziagen, Epzicom or Truvada
32.2% 274
I have switched off from AZT to Viread, Ziagen, Epzicom, or Truvada
12.1% 103
I have taken Uridine (Nucleomaxx) 1.3% 11Other 8.0% 68
Do you have or have you had high cholesterol/triglycerides?
Answer OptionsResponse Percent Response Count
Yes 68.4% 675No 26.1% 258I do not know 5.5% 54
Do you think some HIV medications can increase belly fat?
Answer OptionsResponse Percent
Response Count
Yes 83.7% 825No 0.8% 8Not sure 13.5% 133I think HIV causes it, not the medications 2.0% 20
Do you think some HIV medications can increase fat loss under the skin (facial wasting, veiny legs/arms, fat loss in the butt)?
Answer OptionsResponse Percent
Response Count
Yes 88.6% 874No 0.9% 9Not sure 7.1% 70I think HIV causes it, not the medications 3.3% 33
