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Page: Page 1 (Two Pages)- THIS SURVEY IS ONLY FOR PEOPLE WITH HIV
1. How old are you?
 answered question1,992
 
skipped question
9
 Response
Percent
Response
Count
Under 15 years old
0.2%4
15-20
0.2%4
20-25
0.7%14
25-30
2.0%40
30-35
4.2%84
35-40
7.9%158
40-45
20.3%405
45-50
22.0%439
50-55
21.4%427
55-60
13.2%263
Over 60
7.7%153

2. What is your ethinicity?
 answered question1,992
 
skipped question
9
 Response
Percent
Response
Count
White
73.3%1,461
Black
10.4%207
Latino
10.7%213
Asian
2.8%56
American Indian
0.5%10
Other
2.3%45

3. What is your gender?
 answered question1,992
 
skipped question
9
 Response
Percent
Response
Count
Female
14.1%281
Male
85.5%1,704
Transgender
0.4%7

4. How long have you known that you are HIV positive?
 answered question1,992
 
skipped question
9
 Response
Percent
Response
Count
Under 5 years
10.2%203
5- 10 years
13.0%259
10-15 years
19.6%391
15-20 years
25.3%504
over 20 years
31.9%635

5. Are you currently taking HIV medications?
 answered question1,992
 
skipped question
9
 Response
Percent
Response
Count
Yes
95.4%1,900
No
4.6%92

6. If you are taking or have taken medications for HIV, how long have you taken them (total years)?
 answered question1,938
 
skipped question
63
 Response
Percent
Response
Count
Under 5 years
14.4%280
5-10 years
19.2%372
10-15 years
31.9%619
15-20 years
34.4%667

7. Have you taken any of these medications in the past?
 answered question1,724
 
skipped question
277
 Response
Percent
Response
Count
Zerit (D4T)
81.4%1,404
AZT
77.4%1,334
Crixivan
47.9%825
High dose Norvir
38.7%668
Hydroxyurea
9.7%167
DDI (videx)
52.5%905
DDC (Hivid)
26.9%464

8. Have you had body shape changes after starting HIV medications in the past?
 answered question1,998
 
skipped question
3
 Response
Percent
Response
Count
Yes
88.2%1,762
No
11.8%236

9. What kind of body changes are you experiencing or have you experienced?
 answered question1,952
 
skipped question
49
 Response
Percent
Response
Count
Involuntary weight loss/wasting
44.9%877
Abdominal (Belly) Fat Gain
60.1%1,173
Facial Wasting
83.1%1,622
Butt Wasting
68.5%1,337
Veiny Legs or Arms
64.1%1,252
Increased Breast Size
20.3%396
Buffalo Hump (Behind The Neck)
20.7%404
Increased Neck Size
15.3%298
Parotid Gland Enlargement (sides of face)
14.8%288
Other
5.6%109
If other, please specify
[ShowReplies]
146

10. Have you experienced depression or anxiety due to the body changes?
 answered question1,998
 
skipped question
3
 Response
Percent
Response
Count
Yes
89.8%1,794
No
10.2%204

11. Have you ever thought of killing yourself due to your body changes?
 answered question1,998
 
skipped question
3
 Response
Percent
Response
Count
Yes
27.1%541
No
72.9%1,457

12. 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?
 answered question1,998
 
skipped question
3
 Response
Percent
Response
Count
Yes
44.4%887
No
55.6%1,111

13. Have the body changes cause you to: (check all that apply)
 answered question1,906
 
skipped question
95
 Response
Percent
Response
Count
Stop socializing and going out to meet people
68.9%1,314
Stop dating
53.0%1,010
Decrease sexual activity
72.8%1,388
Increase sexual activity
3.6%68
Worry too much about people finding out you are HIV+
63.5%1,211
Be rejected by potential sexual partners
55.3%1,054
Affect your job performance
28.4%541
Stop looking at yourself in the mirror
58.4%1,113
Change your clothing style
53.6%1,022
Abuse drugs or alcohol to feel better
19.3%368
Deplete your finances in search of a solution
28.9%551
Other
6.8%130
Please Specify
[ShowReplies]
166

14. What have you done to try to reverse your body changes? (check all that apply)
 answered question1,849
 
skipped question
152
 Response
Percent
Response
Count
Exercised more
70.7%1,307
Watch what I eat
69.6%1,287
Got my face injected with a filler or cosmetic product
40.1%741
Got my parotid glands treated with radiation
1.4%26
Took supplements that I heard may help my body fat/muscle
40.0%740
Used testosterone
42.0%776
Used human growth hormone
16.0%295
Used nandrolone (Deca durabolin)
13.4%247
Used Oxandrin
11.8%218
Got liposuction
7.0%130
Got butt implants
1.5%27
Use padded underwear
14.3%265
Other
6.7%123
If other, please specify
[ShowReplies]
184

15. 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)
 answered question1,654
 
skipped question
347
 Response
Percent
Response
Count
No one has. I had to pay with my own money
64.3%1,063
Yes, my insurance company has
16.7%277
Yes, my HMO has
4.0%66
Yes, my ADAP/Ryan White program has
7.0%115
Yes, my country's health system has
7.4%122
Yes, a supplier's patient assistance program has
11.4%189
Please specify what was paid for
[ShowReplies]
409

16. Have you had facial wasting (lipoatrophy)?
 answered question1,997
 
skipped question
4
 Response
Percent
Response
Count
Yes
83.0%1,657
No
17.0%340

17. What option have you used to improve your facial lipoatrophy? (check all that apply)
 answered question1,754
 
skipped question
247
 Response
Percent
Response
Count
I have done nothing
44.6%783
I have used BioAlcamid
5.2%91
I have used silicone
5.8%101
I have used Sculptra (New Fill or polylactic acid)
29.3%514
I have used Radiesse
7.0%122
I have used PMMA in Rio, Tijuana or other
4.0%70
I have switched off from Zerit to Viread, Ziagen, Epzicom or Truvada
27.0%473
I have switched off from AZT to Viread, Ziagen, Epzicom, or Truvada
12.2%214
I have taken Uridine (Nucleomaxx)
1.0%18
Other
8.4%148
please specify
[ShowReplies]
242

Page: Page 2
18. Do you have or have you had high cholesterol/triglycerides?
 answered question1,924
 
skipped question
77
 Response
Percent
Response
Count
Yes
63.7%1,225
No
28.9%556
I do not know
7.4%143

19. Have you had or do you have higher than normal blood glucose (sugar)?
 answered question1,924
 
skipped question
77
 Response
Percent
Response
Count
Yes
26.8%516
No
59.0%1,136
I do not know
14.1%272

20. Have you heard from your doctor or other sources that belly fat, high LDL (bad) cholesterol, high triglycerides or high blood sugar may affect your health and mortality?
 answered question1,924
 
skipped question
77
 Response
Percent
Response
Count
Yes
72.9%1,403
No
21.0%405
I do not remember
6.0%116

21. Do you think some HIV medications can increase belly fat?
 answered question1,923
 
skipped question
78
 Response
Percent
Response
Count
Yes
80.3%1,544
No
0.7%13
Not sure
16.8%323
I think HIV causes it, not the medications
2.2%43

22. Do you think some HIV medications can increase fat loss under the skin (facial wasting, veiny legs/arms, fat loss in the butt)?
 answered question1,923
 
skipped question
78
 Response
Percent
Response
Count
Yes
88.5%1,702
No
0.9%18
Not sure
7.3%141
I think HIV causes it, not the medications
3.2%62

23. What do you want me to tell or ask lipodystrophy researchers about what the research needs are for that problem?
 answered question1,009
 
skipped question
992
 Response
Count
[ShowReplies]1,009

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