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Current Results for Share Your Personal Story

1. What is your connection to multiple sclerosis or the National MS Society?

Total Number of Responses 266

Value

 

Count

 

Percent

I have MS

 

234

 

88.0

I have a family member with MS

 

42

 

15.8

I am a volunteer for the Society

 

31

 

11.7

I have a friend with MS

 

27

 

10.2

I am a Society event participant or donor

 

23

 

8.6

I am a healthcare professional

 

14

 

5.3

I am a caregiver for someone with MS

 

12

 

4.5

Other

 

7

 

2.6

  

2. If you have MS, what type of MS have you been diagnosed with?

Value

 

Count

 

Percent

Relapsing-Remitting MS

 

91

 

75.8

Secondary-Progressive MS

 

13

 

10.8

User Provided No Response

 

7

 

5.8

Primary-Progressive MS

 

6

 

5.0

Progressive-Relapsing MS

 

3

 

2.5

  

3. What is your gender?

Value

 

Count

 

Percent

Female

 

168

 

82.8

Male

 

34

 

16.7

Prefer not to say

 

1

 

0.5

  

4. Have you ever served in the military?

Value

 

Count

 

Percent

No

 

241

 

89.6

Yes

 

22

 

8.2

User Provided No Response

 

6

 

2.2

  

5. Please tell us about how MS has impacted your life.

Latest User Responses:

I was first diagnosed in ...
 

 

 

MS turned my life upside ...
 

 

 

I live in the state of No...
 

 

 

Tremendously. Have had t...
 

 

 

Do you really want to hea...
 

 

 


View All Responses for question #5

6. Have you had continuous health insurance coverage for the past year? If yes, please indicate the source(s) of your insurance; check all that apply.

Total Number of Responses 131

Value

 

Count

 

Percent

User Provided No Response

 

39

 

29.8

I have health insurance coverage from a current or former employer (my own employer, or my spouse's employer).

 

32

 

24.4

Difficulty applying, appealing, or qualifying for Social Security disability benefits.

 

18

 

13.7

I am in Medicaid.

 

14

 

10.7

I am a Medicare beneficiary.

 

14

 

10.7

Waiting 24 months for Medicare after qualifying for Social Security disability benefits.

 

13

 

9.9

Trouble obtaining rehabilitation services, preventive care, durable medical equipment, mental health, hospice, or other care.

 

12

 

9.2

I have health insurance coverage from another source (high risk pool, COBRA, student coverage).

 

5

 

3.8

I obtained health insurance coverage or Medicaid from the Marketplace or my state health insurance exchange.

 

5

 

3.8

I have health insurance coverage from my parent's employer.

 

5

 

3.8

I am covered through the VA, Tri-Care, CHAMPUS.

 

4

 

3.1

I have my own 'Individual' or 'family' health insurance policy.

 

4

 

3.1

Difficulty applying, appealing, or qualifying for Social Security benefits.

 

1

 

0.8

Waiting 24 months for Medicare after qualifying for Social Security benefits.

 

1

 

0.8

  

7. If you selected any of the above, please share that story.

Latest User Responses:

My insurance required a p...
 

 

 

I am a medically retired ...
 

 

 

I just got medicaid on 7/...
 

 

 

Ridiculously expensive. ...
 

 

 

User Provided No Response...
 

 

 


View All Responses for question #7

8. Please indicate how your costs changed (or not) in the past year; check all that apply.

Total Number of Responses 65

Value

 

Count

 

Percent

Insurance Premium (amount you pay for coverage) went up.

 

31

 

47.7

Other cost changes:

 

28

 

43.1

Prescription Drug Costs (amount you pay) went up.

 

26

 

40.0

Insurance Annual Deductible went up.

 

17

 

26.2

Prescription Drug Costs went down.

 

6

 

9.2

Insurance Premium went down.

 

3

 

4.6

Insurance Annual Deductible went down.

 

1

 

1.5

  

9. If you selected any of the above, please share that story.

Latest User Responses:

Both my plan and drug costs increased slightly.
 

 

 

My medication for MS co pay increased somewhat this year
 

 

 

I had to stop getting a lot of my medication because I couldn't afford them, besides MS I have diabetes, high blood pressure, heart disease.
 

 

 

User Provided No Response
 

 

 

I haven't had any changes. So far.
 

 

 


View All Responses for question #9

10. In the past year, has your health insurance plan made changes to any benefits important to your MS care? Please check all that apply.

Total Number of Responses 131

Value

 

Count

 

Percent

User Provided No Response

 

92

 

70.2

Other changes:

 

16

 

12.2

Trouble accessing housing, home modifications, or transportation options.

 

11

 

8.4

Difficulty finding help or relief with caregiving duties.

 

9

 

6.9

Difficulty obtaining home- or community-based care.

 

7

 

5.3

I had to switch to a different doctor or other healthcare provider due to changes in my health coverage.

 

7

 

5.3

Challenges with long-term supports.

 

6

 

4.6

I had to switch to a different MS drug due to changes in my health coverage.

 

4

 

3.1

  

11. If you selected any of the above, please share that story.

Latest User Responses:

User Provided No Response...
 

 

 

User Provided No Response...
 

 

 

Medicaid was taken from m...
 

 

 

User Provided No Response...
 

 

 

There hasn't been any cha...
 

 

 


View All Responses for question #11

12. Do you or your loved one utilize a customized wheelchair or scooter through Medicare?

Value

 

Count

 

Percent

No

 

52

 

80.0

User Provided No Response

 

9

 

13.8

Yes

 

4

 

6.2

  

13. Please describe any changes in your health coverage that is affecting your access to affordable care either positively or negatively:

Latest User Responses:

User Provided No Response...
 

 

 

User Provided No Response...
 

 

 

I have been falling a lot...
 

 

 

User Provided No Response...
 

 

 

User Provided No Response...
 

 

 


View All Responses for question #13

14. Signed Media Release

Value

 

Count

 

Percent

User Provided No Response

 

267

 

100.0

  

15. Recommendations for use of this story and further routing. Completed by interviewer.

Total Number of Responses 267

Value

 

Count

 

Percent

User Provided No Response

 

266

 

99.6

Advocacy

 

1

 

0.4

Chapter Staff

 

1

 

0.4

Media / PR

 

1

 

0.4

Marketing

 

1

 

0.4

  

16. Chapter Contact or Relationship Owner

Latest User Responses:

User Provided No Response
 

 

 

User Provided No Response
 

 

 

User Provided No Response
 

 

 

User Provided No Response
 

 

 

User Provided No Response
 

 

 


View All Responses for question #16

17. Have you or your loved one with MS had difficulty getting or keeping health insurance?

Value

 

Count

 

Percent

No

 

140

 

69.0

Yes

 

48

 

23.6

Unsure

 

15

 

7.4

  

18. Have you or your loved one with MS experienced significant financial strain due to high health insurance or prescription drug costs?

Value

 

Count

 

Percent

Yes

 

110

 

54.2

No

 

76

 

37.4

Unsure

 

17

 

8.4

  

19. Would you or your loved one with MS make different healthcare decisions if you knew the cost ahead of time for certain services?

Value

 

Count

 

Percent

Yes

 

87

 

42.9

0 - 3 prescriptions

 

38

 

18.7

No

 

33

 

16.3

4 - 6 prescriptions

 

27

 

13.3

7 or more prescriptions

 

17

 

8.4

Unsure

 

1

 

0.5

  

20. Have you or your loved one with MS had to change providers because of the new insurance laws (neurologist, therapists (rehab and mental health).

Value

 

Count

 

Percent

No

 

96

 

47.3

$0-$99

 

39

 

19.2

$100-$249

 

24

 

11.8

Yes

 

24

 

11.8

$250-$499

 

14

 

6.9

$500 or more

 

6

 

3.0

  

21. How many prescription(s) are you or your loved one with MS taking currently to treat MS?

Value

 

Count

 

Percent

0 - 3 prescriptions

 

65

 

54.2

4 - 6 prescriptions

 

38

 

31.7

7 or more prescriptions

 

16

 

13.3

Unsure

 

1

 

0.8

  

22. How much do you or your loved one spend OUT OF POCKET each month for MS related prescriptions?

Value

 

Count

 

Percent

$0-$99

 

69

 

57.5

$100-$249

 

30

 

25.0

$250-$499

 

13

 

10.8

$500 or more

 

8

 

6.7

  

23. Have or could your loved one with MS benefit from Medicaid expansion? (If your family income is approximately $15,000 or less for 1 person, $21,000 or less for 2 people or $31,000 or less for 4 people, you might benefit.)

Value

 

Count

 

Percent

No

 

111

 

54.7

Unsure

 

51

 

25.1

Yes

 

41

 

20.2

  

24. If yes, please share how enrollment in Medicaid has impacted or would impact you and/or your loved one with MS?

Latest User Responses:

User Provided No Response...
 

 

 

User Provided No Response...
 

 

 

I could have but as for t...
 

 

 

User Provided No Response...
 

 

 

User Provided No Response...
 

 

 


View All Responses for question #24

25. Have you or loved one with MS been involved in any MS- related research?

Value

 

Count

 

Percent

No

 

142

 

70.0

Yes

 

48

 

23.6

Unsure

 

13

 

6.4

  

26. Please tell us about the impact this MS research had on you or your loved one with MS?

Latest User Responses:

User Provided No Response...
 

 

 

User Provided No Response...
 

 

 

User Provided No Response...
 

 

 

User Provided No Response...
 

 

 

User Provided No Response...
 

 

 


View All Responses for question #26

27. Thank you for your time. Please fill out the contact form below; we may contact you for more information.

Total Number of Responses

269

28. This is my story.

Value

 

Count

 

Percent

I hereby authorize a representative from the National Multiple Sclerosis Society to contact me about using my story for media, advocacy, or other opportunities when it's important to show the real faces and stories of MS.

 

269

 

100.0