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Save the Orphan Drug Tax Credit!

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Congress passed the final Tax Cuts and Jobs Act, wherein the ODTC is cut from 50 percent of qualified clinical testing expenses, to 25 percent. While this is disappointing, and certainly not what we were hoping for, it is much better than the ODTC being repealed entirely, as was proposed in the House’s original version.
Your voices made an impact, and for that we are incredibly grateful. Throughout tax reform there were over over 4,000 emails, countless phone calls, and 1,500 uses of the hashtag #SaveOrphanDrugs for the Orphan Drug Tax Credit alone. That’s amazing!
We will continue to stand up for the rare disease community and we hope that you will continue to join us.

Why is the ODTC Important for Rare Diseases?

The ODTC allows drug manufacturers to claim a tax credit of 50 percent of the qualified costs of clinical research and drug testing of orphan drugs (drugs for diseases affecting 200,000 Americans or fewer). The ODTC is part of a package of provisions enacted in 1983 in the Orphan Drug Act (ODA) that provides incentives for drug companies to develop products for rare diseases. This legislation has been extremely successful.

Without the ODTC, one-third fewer orphan drugs would be developed going forward.

In the decade before the ODA, only 10 medicines were developed by industry for rare diseases. Since 1983, however, more than 3,500 potential treatments have been designated as an orphan drug, and more than 500 orphan therapies have been approved by FDA. This is a direct result of the incentives provided by the ODA, including the tax credit.

Ways to Take Action

Call Your Senators and Representatives Today!

CALL SCRIPT: 

• My name is [NAME] and I’m a voter and concerned constituent calling from [CITY].

• I understand [Senator or Representative] [NAME] is currently evaluating the Tax Cuts and Jobs Act.

• I am asking the [Senator or Representative] to stand up for the rare disease community and OPPOSE the proposal to cut the credit in half in the Senate bill, and repeal it entirely in the House bill.

• I am concerned because I am a [patient, family member, doctor etc. – explain your personal connection].

• 95 percent of men, women, and children with rare diseases are still waiting for their very first treatment for their disease.

• Repealing or weakening the Orphan Drug Tax Credit would mean potentially more than 10 fewer orphan therapies being developed each year, resulting in thousands of additional patients each year still left waiting.

• [If you or a loved one are still waiting for a therapy for your or their disease, tell your personal story here!]

• I ask the [Senator or Representative] to stand up for the rare disease community and protect the Orphan Drug Tax Credit.

Thank you for your time and consideration.

Email Your Senators and Representatives Today!

Email Script:

Subject Line: 

Please Oppose Repeal or Weakening of the Orphan Drug Tax Credit

Body of Email:

As your constituent, I am writing today to ask that you oppose the proposed repeal and weakening of the Orphan Drug Tax Credit within the Tax Cuts and Jobs Act. The Senate version cuts the credit in half, and the House version repeals it entirely.

I understand that the Tax Cuts and Jobs Act is intended to simplify and improve the tax code, but repealing or weakening the Orphan Drug Tax Credit will only harm patients with rare diseases. Over 95 percent of individuals with rare diseases are still waiting for a treatment for their disease, and the Orphan Drug Tax Credit is a critical incentive to ensuring companies develop these treatments.

Congress has stood up for the rare disease community many times, including by enacting the 21st Century Cures Act and the Food and Drug Administration Reauthorization Act. But by repealing or weakening the Orphan Drug Tax Credit, one of the only credits that actually saves lives, Congress will be moving in the opposite direction.

Please join me and the entire rare disease community in fighting for the Orphan Drug Tax Credit, and ensuring it will not be repealed or weakened as part of tax reform.

Join the conversation on social media to make sure the voices of the rare disease community are heard!

  • Use the primary hashtag: #SaveOrphanDrugs
  • Jointly with: #raredisease #OrphanDrugTaxCredit 

To tag Senators and Representatives on social media, find their information here.

Sample Tweet Messages:

  • Repealing the #OrphanDrug Tax Credit would be gravely disappointing for #raredisease community. Please don’t weaken the ODTC any further. Please don’t repeal it. #SaveOrphanDrugs
  • Weakening the #OrphanDrug Tax Credit also weakens my hope of a treatment, but please don’t take away my hope entirely by repealing it. #SaveOrphanDrugs
  • {Tag Senator or Rep} Please #SaveOrphanDrugs & preserve my hope of a treatment for my #raredisease & ensure future development of #OrphanDrugs. Do NOT repeal or weaken further the #OrphanDrug Tax Credit.
  • Of the 7K #rarediseases, only a few hundred have approved treatments. We cannot afford for the #OrphanDrug Tax Credit to be repealed or weakened any further. #SaveOrphanDrugs
  • The #OrphanDrug Tax Credit gives me hope for a future treatment for my #raredisease. Please don’t take away my hope or weaken it any further. #SaveOrphanDrugs
  • I stand by @RareDiseases and 30M Americans living with a #raredisease who are in support of the #OrphanDrug Tax Credit. Do not repeal it, do not alter it any further. #SaveOrphanDrugs
  • I am a #raredisease patient who does not have a treatment. Weakening the #OrphanDrug Tax Credit any further also weakens my hope of a treatment. Please #SaveOrphanDrugs {Tag Senator or Rep}!
  • Retweet & take action to #SaveOrphanDrugs. Millions of #raredisease patients rely on it for the hope of a future treatment. Call Congress here: {appropriate link here}
  • #SaveOrphanDrugs for 30M Americans w/ #rarediseases who rely on future development of #OrphanDrugs: {appropriate link here}
  • The #OrphanDrug Tax Credit gives hope to 95% of ppl w/ #rarediseases who still don’t have a treatment. Don’t weaken their hope any further. #SaveOrphanDrugs
  • Weakening the #OrphanDrug Tax Credit weakens my hope, but please don’t take away my hope entirely. #SaveOrphanDrugs. {insert picture of yourself}

Sample Facebook Post

  • Will you help me #SaveOrphanDrugs? Congress is debating the repeal or the substantial weakening of the #OrphanDrug Tax Credit (ODTC) which would steal hope from patients who still don’t have an approved treatment. Without the ODTC, one-third fewer new treatments will be developed moving forward. Please, take a moment to call or email your Senators and Representative here: bit.ly/odtc
  • I stand with @NationalOrganizationforRareDisorders and 200 other #raredisease patient advocacy organizations in support of the #OrphanDrug Tax Credit! Please join me in telling Congress to not repeal or weaken it. 30 million Americans with #rarediseases, including me, rely on it. Please #SaveOrphanDrugs and join me by taking action here: bit.ly/odtc
  • Congress is considering the repeal or the substantial weakening of the #OrphanDrug Tax Credit right now. Please join me and #SaveOrphanDrugs. Why? Because without the ODTC, one-third fewer #orphandrugs will be developed moving forward. That takes away hope for millions of Americans who still don’t have a treatment for their #raredisease. Take action now! Call on Congress here: bit.ly/odtc

State Specific Messages to Share

Twitter:

{Tag Senator or Rep} Please #SaveOrphanDrugs to preserve my hope of a treatment for my #raredisease & ensure future development of #OrphanDrugs. {include picture of yourself}

{Tag Senator or Rep} #RareDisease patients in {insert state} rely on the #OrphanDrug Tax Credit for the possibility of treatments! Don’t take away our hope or weaken it any further. Please #SaveOrphanDrugs

{Tag Senator or Rep} #SaveOrphanDrugs! Please don’t pass #taxreform that weakens the #OrphanDrug Tax Credit any further. #RareDisease patients in {insert state} rely on it.

{Tag Senator or Rep} will you stand with #raredisease patients in {insert state} who are relying on the #OrphanDrug Tax Credit? Don’t repeal or weaken the #OrphanDrug Tax Credit! Please stand with us & #SaveOrphanDrug!

{Tag Senator or Rep} {insert state} #raredisease patients need you to #SaveOrphanDrugs! Please don’t repeal or weaken the #OrphanDrug Tax Credit!

Title

Send a video message to your Senators and Representative through Facebook, Twitter and/or Email. A sample video message is below. If on social, make sure you use the hashtag #SaveOrphanDrugs

Dear [enter Senators/Representative here],

Please save orphans drugs by preserving the Orphan Drug Tax Credit.

My name is [blank], I live in [blank], and I am/have [connection to rare disease community].

The ODTC gives hope to the 95% of individuals with a rare disease living without a treatment.

Without the ODTC, 33% fewer orphan drugs will be developed going forward.

[Insert personal connection, e.g. have a treatment due to the ODTC, or still waiting for a treament and need the ODTC to remain in place].

Please stand up for me and the rest of the rare disease community and #SaveOrphanDrugs.

Share Message on Social Media and Tag Your Senators

Download the image below, print it out, fill in the blanks, post it on social media, and tag your Senators. Find the Facebook profile for your Senator here.

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Download an image below to share on social media. Adding photos to your posts helps them to be seen more easily on social media newsfeeds.

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