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How Many Stage 4 Girls are getting SS disability..

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  • sf-cakes
    sf-cakes Member Posts: 576
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    Thank you emac and cookie, I really appreciate hearing about your experience with this!

  • wengellen
    wengellen Member Posts: 14
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    Thanks for this forum, I was able to get my SDI and SSDI approved with no issues. (although many many trips were made to SDI and SSA offices) . I worked for a startup company with almost no benefits. My journey has been hectic to say the least. So I want to share it here in case it helps anyone. I was originally diagnosed stage IIA at Kaiser. I did not get the suggested treatments (surgery and chemo) but rather with alternative herbal remedies and 1.5 years later when I was visiting my families overseas, I was diagnosed with stage IV cancer (spread to neck LN). I was put on Letrozole and Kisqali right away. But by the 3rd round, my body is too weak to do my regular job as a software developer, so I stopped working (leave of absent) and then went online to SSA website and started my SSDI application. And I was going to apply for SDI online as well, but was met with two problems: one that I was not able to create a SDI account for some unknown reason and as you know, their phone line is always busy. So, I requested the paper version to be mailed to me. And then I realized that my Oncologist overseas does not know (not qualified??) to certify my SDI. So, I enrolled in an individual insurance plan in Feb. 2024 and was able to get referred to an Oncologist who is able to certify my SDI after I have shared with her my PET scan and other reports. However, she was only willing to certify for three month because she believes people with stage IV cancer should still work unless I can prove to her that I am cognitively impaired that I can no longer do my job. So, when I returned to California on 02/21, I sent in the paper version of SDI form. (I should have gone to the SDI office directly) and a letter of explanation to explain why I have filed the SDI late and why I am filing using the paper form and that I am doing my best to get all these form ready with a severe brain fog from my anti-cancer medication and my Sjogren’s disease. I shipped using next day mail but waited for 2 weeks, still have not received any letter from SDI. So, I decided to drive down to Oakland SDI office to ask them the status of my case in person. The wait was OK, about two hours. And it turned out to be some error with my address. So, they corrected that on the spot and say the case was approved, which was great, although I still have to call EDD tech support to resolve my SDI account creation issue. And after several phone calls with them, someone finally was able help resolved the issue and I was able to create my SDI account and see all the details of my claim. Then, I called my ON nurse navigator and ask if my ON can write a diagnose letter with staging information. So, I got my stage IV diagnose from her. Then, I went down to Social security office with my pathology report and the diagnose letter from her. And they were able to locate my application online. The agent asked me to sign a release of information form and ask if I have completed some adult functional form. I told her I don’t have the form completed yet and all of the test reports are still being translated and certified. And they will be mailed to me in two weeks. She told me once I received them I can put them in the drop box directly. I did not tell my ON that I am applying for SSDI. So, for the next 10 days, I log on to social security website multiple times a day to see the progress. And I don’t remember how long, but within like 10 days, my case has gone through to the final stage. I then remember that my SDI might impact my SSDI amount so I went down to SDI office again to get the “award” letter (SDI does not have one, but the guy at SDI know exactly what I need to show SSDI and printed a summary for my case) . Then I went down to SSDI after i got my SDI “award letter” and tell them that I noticed that my SSDI claim is at the final stage and here is the SDI award letter so they can adjust the SSDI amount accordingly (80% max of your base pay minus SDI amount). So, the agent at SSA made some copy of the documents told me he has approved my SSDI claim on the spot. So, my first payment from SSDI will be 7/10. With my SSDI approved, I then went back to my ON nurse navigator and tell her that I have been approved of SSDI and I really don’t think my severe brain fog (from Sjogren’s and anti cancer drug) will ever clear up and that my software developer job is really too much for me to handle now. And that I am hoping my ON can certify my SDI to be an entire year instead of just three month. To my surprise, there were no push back from the nurse at all. She told me to expect to see the updated certification from the ON in the next few days. And by the end of that same day, I got the certification letter from my ON for the entire year. So, I called KP to submit that to SDI right away. And that was 3/26. I got both the SDI and SSDI approved almost within one month. Thanks to this amazing forum and all of your help, I was able to learn from many of you. And to know that there are many treatment options and opinion out. And more importantly, that I don’t take no for answer and just keep fighting what I think is right. And by the way, I am 50 years old. So, maybe it’s easier to get SSDI approved. And I am also on Medi-cal, so the meds should be covered as well. (not 100% sure yet. just started in April 1).


    Thanks and hugs to all.

  • seeq
    seeq Member Posts: 1,132
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    SF-Cakes, I applied during the pandemic, so it was all online - with very helpful phone support from the local office. After the local office processed their part, it went for higher level medical review and I had to supply medical documentation, including imaging to them. Once they had that, it breezed through.

  • cookie54
    cookie54 Member Posts: 753
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    Hey all, Was wondering if anyone has any tips regarding Xeloda and pricing with Medicare. I am currently on Cobra and SSDi due to Stage IV status which makes me eligible for Medicare on 7/1. I will be talking with my local SHIP office to help with Medicare but figured I would ask for any inside info. Open to any advice when picking drug plans etc.Thanks.

  • kbl
    kbl Member Posts: 2,796
    edited April 25
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    @cookie54 I am on a Medicare Advantage plan, and when I was on Xeloda, it was covered under Part B because it’s a chemo pill. I paid roughly $15 per month.

  • divinemrsm
    divinemrsm Member Posts: 6,216
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    My objective isn’t to turn this into a political discussion, but I do want to share the following article about positive, important changes coming for Medicare prescription prices. These changes are the result of President Joe Biden passing legislation to make drugs more affordable for seniors. Many stage iv women will benefit from this. It is one of the reasons I’m voting for President Biden in November, especially since Republicans are on record stating that they want to cut Medicare benefits. I’ll just leave it at that.

    Opinion Monumental changes to prescription drug prices for seniors are coming

    Leana S. Wen/WaPo

    Thanks to the Inflation Reduction Act, one of President Biden’s signature achievements, prescription drugs are set to become substantially more affordable for seniors. Yet many Americans seem unaware of just how monumental these changes will be.

    Here are six things to look for:

    1) Drug price negotiation. For the first time in history, Medicare can now negotiate directly with manufacturers. For the initial round of negotiations, the Centers for Medicare and Medicaid Services chose 10 drugs that treat common health conditions, including cardiovascular disease, cancer and rheumatoid arthritis.

    Each of these medications costs consumers in the United States three to eight times what people pay in other countries. In 2022, Medicare paid an eye-popping $46.4 billion for them. The impact to consumers is equally staggering. As CMS Administrator Chiquita Brooks-LaSure told me, “Some of these drugs are thousands of dollars per year for people who depend on them to live.”

    It will take some time for negotiated prices to take effect. Assuming the federal government prevails in the lawsuits filed by pharmaceutical companies, CMS expects lower prices to be in place in 2026.

    But that’s only the beginning. Fifteen more drugs will be selected for 2027 and then 20 per year from 2029 and thereafter. The lower prices are projected to savethe federal government $100 billion over the next several years. Crucially, this means that the negotiations won’t just benefit people who are on these specific medications; the savings are passed along, indirectly, to everyone on Medicare.

    2) A cap on out-of-pocket spending. While the IRA’s price negotiation provision has garnered the lion’s share of media attention, this change will have the most direct consequence for most seniors. In 2025, everyone with Medicare’s prescription drug benefit, called Part D, will pay no more than $2,000 per year out of pocket for medications.

    CMS projects that nearly 19 million seniors will save an average of $400 per year. But this number alone does not tell the full story. Brooks-LaSure shared with me that she recently met a woman with leukemia. “She’s spending $12,000, which was 13 percent of her gross income, just for one drug,” she said.

    I myself have treated patients who chose not to fill medications because out-of-pocket costs were too high. I’ve met spouses who delayed retirement and caregivers who worked extra jobs just so they could cover their loved one’s prescription costs.

    This should not happen. The $2,000 maximum will be a huge step toward health-care affordability.

    3) Lower prices for insulin. This provision has already been implemented. The IRA capped the cost of insulin at $35 per month for Medicare beneficiaries, allowing about 4 million seniors with diabetes to save around $761 million per year.

    This change has resulted in a welcome “spillover effect,” with at least three major drugmakers voluntarily agreeing to cut their insulin prices for people with private insurance outside of Medicare.

    4) Free vaccines. This has also already been implemented: All adult vaccines recommended by the Centers for Disease Control and Prevention are now free for everyone with Medicare Part D.

    This is expected to save the average senior nearly $70 per year. Some may save substantially more. For example, as Brooks-LaSure explained, the shingles vaccine can cost as much as $300.

    5) Inflation penalty for drug manufacturers. A lesser-known but also noteworthy change is that drug companies now have to pay a rebate to Medicareif they increase prices faster than inflation. Those rebates will transfer to consumers, saving as much as $3,500 per dose in the next year, CMS reports.

    Brooks-LaSure believes this program will discourage drug companies from rapidly increasing their prices. Like the insulin cap, the spillover effect could benefit people with other types of insurance.

    6) Extra help for the most vulnerable. The IRA provides an income-based subsidy for Medicare enrollees. This, Brooks-LaSure said, is the least understood and least utilized aspect of the IRA’s prescription drug reforms.

    The reason is because, unlike the other provisions, people need to actively opt into the program to benefit. But for people who depend on Social Security benefits and do not have other sources of income, she told me, the program “can result in significant savings — on average, a couple of hundred dollars a year.”

    As many as 3.6 million seniors who are eligible for this program are not yet enrolled. Those who think they might qualify should connect with a caseworker by calling 1-800-Medicare. And everyone not yet signed up for Part D should enroll to take advantage of all the new policy changes.

    That 1 in 5 older adults report not taking their prescribed medications because they are too expensive is an indictment of our health-care system. No one should have to choose between paying for medicines and affording food and rent. It’s unfortunate that the Biden administration hasn’t been given more credit for its effort to address this problem, especially because it is already helping seniors in tangible ways.

  • candy-678
    candy-678 Member Posts: 4,145
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    divine- I "Liked" your post. Totally agree.

  • sf-cakes
    sf-cakes Member Posts: 576
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    I ended up filing for SSDI on-line, and then taking documentation to the local office for scanning. Just got a call today that I have been approved, payments will start in a few months. Took one month to get the approval, very fast! Phew, this is a relief. Thanks for all the suggestions about how to do this.

  • anx789
    anx789 Member Posts: 241
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    Hi ladies, anyone under 60 years old here getting SSDI? I’m 54 years old, I’m on SDI right now. With my current situation, I’m eligible to retire from work but money will not be enough. Can I retire and get SSDI at the same time?

  • candy-678
    candy-678 Member Posts: 4,145
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    Anx789- I am confused on the terms you are using. What is SDI you are getting now? Social Security Disability is where you collect Social Security based on a disability. Metastatic breast cancer is on the list of Compassionate Allowance Program with Social Security where they fast track a person's disability claim. You can Google "Compassionate Allowance Program" and read from the Social Security website. There is a list of diagnosis that fall into the Compassionate Allowance Program. Look for "breast cancer" and it will say "breast cancer with distant metastasis". That just means when you apply to Social Security for Disability, they can fast track your application for approval.

    If you are asking about receiving Social Security for retiring— due to your age of retirement— AND getting Social Security Disability, you cannot get both. But, I see you are 54, so you are not 62,65,67 retirement age. So I don't know in your situation. You can call your local Social Security office and tell them of your situation.

    I hope this helped, as I am confused about your situation. And there are so many "retirement" situations— my sister is a teacher and when she retires she will not get Social Security, but a teacher's retirement plan. So could she get Social Security Disability PLUS that teacher's plan too, if she had metastatic breast cancer???? I don't know.

  • anx789
    anx789 Member Posts: 241
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    SDI is State Disability Insurance. I paid premium through salary deductible . It only covers 6-12 months depending on how much ypui put in. My question is, with SSDI, (SSA) at my age, 54, I’m a qualified ?

  • chicagoan
    chicagoan Member Posts: 1,011
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    Anx789-My understanding is that If you retire before applying for SSDI, you won't qualify. You need to be working, stop working due to your disability and then immediately apply. Since you appear to be Stage 4, you will qualify. There is a six month gap for most people from the day they stop working until when the SSDI begins. There is a 2 year gap until you qualify for Medicare insurance. Once you are on SSDI, you can resume working part-time and make a small amount of money each month. It's a lot to consider.

  • candy-678
    candy-678 Member Posts: 4,145
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    Thanks Anx789 for responding. I am not that versed in State Disability Insurance, as my State does not have that. I had Short Term Disability and Long Term Disability thru my full time employer. I used that after my diagnosis and as I decided to stop working. And also I applied for Social Security Disability with the help of my HR person.

    As Chicagoan said, you would qualify with Stage 4. And your age of 54 is ok, as I was 49 when I applied and was accepted. As Chicagoan said, there is a 6 month wait from approval to your first check, and a 2 year gap that you will have to find insurance coverage, as Medicare does not kick in for 2 years. I took out COBRA (an extension of my employer's health insurance).

    You said you are still working. Can you go to your HR person for help? Or ask your State's Disability Insurance people. Or contact your local Social Security office. But, if I was you, I would probably not retire before you get your questions answered, so you don't mess up your chances, as Chicagoan said.

  • anx789
    anx789 Member Posts: 241
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    thanks @chicagoan and @candy-678 for the info, they are very helpful. Do they taxed SSDI benefits?

  • chicagoan
    chicagoan Member Posts: 1,011
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    SSDI can be taxable depending on how much your other income is. You do have to report it on your tax return.

  • candy-678
    candy-678 Member Posts: 4,145
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    Anx789- I never really thought about the taxing. They remove the Medicare premium from my monthly check (since I am over the 2-year mark I get Medicare now), but I never thought about taxes per se. But, I do go to a tax guy each spring and file my taxes, and I give him the receipt they send from Social Security showing my disability payments.

  • candy-678
    candy-678 Member Posts: 4,145
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    So, I have a question for the group…. this is not about Social Security Disability, but my previous employer's long-term disability. I have been receiving LTD since 2019. Periodically they call or have my MO fill out a form and easy peasy I continue the benefits. This time (I am at my 5-year mark) they keep asking for more info from my MO and PCP. Because my latest scans are showing NED, though my MO's notes state I am "stable on current treatment", the LTD company may deny my claim saying I am no longer "disabled".

    Have any of you heard this before !?

    My MO's nurse says I am still Stage 4 and under treatment, and she has not had a problem before with the insurance companies denying a Stage 4 patient.

    Any advice I can use in my appeal?

  • seeq
    seeq Member Posts: 1,132
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    @anx789 - I applied for SSDI (and medical retirement from my employer) while I was still (barely) working. I was using lots of sick leave and struggling to work a couple of hours a day. When they told me I would be denied SSDI, because I was making too much, I stopped struggling and completely stopped working. It took 5-6 mos to get my first SSDI payment, and it's 2 years from that point before you're eligible for Medicare. I would start the process now.

  • anx789
    anx789 Member Posts: 241
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    @seeq and @chicagoan, if I quit my job I will get a little pension from my employer. I asked my local SSA office if it will prevent me from getting the SSDI, the answer is “they do not know” because someone in the higher up is the one that will review my application.

  • chicagoan
    chicagoan Member Posts: 1,011
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    Anx789,

    I was already receiving a pension from an earlier job when I got sick and it did not impact my SSDI. However, I remember that SSDI is only paid if you stop working due to a disability. If a person has been retired for some time, they do not qualify for SSDI. Sorry it is all so confusing.

  • seeq
    seeq Member Posts: 1,132
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    @anx789 - Check out the SSA.gov disability benefits section for detailed information.

    It lists the earnings limit for SSDI and includes metastatic breast cancer on the Compassionate Allowance list, which speeds things up. You can apply online. I provided medical documentation from my doctor, but I think SSA will try to obtain it for you (it's been awhile). I wouldn't guess that a small pension disqualifies you (my disability retirement does not, and I did have to report it to them).

    You need to be clear that it's Stage IV and terminal - and that the reason you're stopping working is because you can't (not that you just decided to retire).

  • anx789
    anx789 Member Posts: 241
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    thank you @seeq. I’m not ready to retire but if I have no choice.

    We will do PET scan next month, this will determine if Taxol & Xeloda works and what’s next to come 🤞.